Listen to Leo!

My mother, bless her tolerance for chaos, went home today after spending a week with us while Iz soccer tournamented, Mali was a hip hop Snow White dwarf in her school play, and we accompanied Leo and his class to a local Winter Wonderland festival. I don't know if Seymour and I would have survived the week without a third parent. We certainly wouldn't have had any clean dishes. My gratitude, it is boundless. Without boundaries. You ever want to see me do backflips, come over and help out in our kitchen.

My mom was also helpful with the never-ending food prepping -- Iz is vegetarian and Leo and Mali have divergent takes on super-pickiness, so unless we're having cheese pizza there are always at least two tracks for every meal. And lately those tracks were accelerated, given all the activities (Mali had play practice every single night until 9:30, then three performances; Iz has soccer practice 3x/week plus tournamenting; Leo had several sessions with Therapist V). So sometimes we got a bit rushed and inattentive. Which Leo doesn't put up with, if it imperils his meal. Doesn't put up with, at all.

Example: Last night we went to my cousin's house for dinner. Which was to be ribs. Which Leo will eat when hell freezes over. So before we left, my mom  offered to make Leo a PB&J sandwich to take with us. But Leo wouldn't let her get on with it -- he kept running back into the kitchen, getting in between her and the counter and telling her "Peanut Butter!" and we kept shooing him out, asking him to let us finish the sandwich so we could get out the door. Except after the third or so pass -- during which time no sandwich got made -- I realized that my mom had accidentally taken out the almond butter instead of the peanut butter -- and Leo does not eat crappy-tasting almond butter unless he absolutely has to.

It's not Leo who was operating at a communication disadvantage last night.

We apologized to Leo and went on our way, and had a lovely evening. But it was a good reminder for both me and my mom to really listen to Leo when he's trying to communicate, even when we're in a hurry. Because he's usually the one who's right.

Soul-Endangering Nutella Cupcakelets

Mali's week of 8th birthday festivities came to a close today, with two parties: one in her class, the other her "real" birthday party at a jumpy house palace. For the latter, she chose a Costco cake (score! from a labor perspective); for the former, she requested Nutella cupcakes. Um. OK. Commence Internet research.

The mini-cupcakes I ended up making (and which had folks on their knees) drew on three components:

1. An appreciation for the nom nom ease of yellow cake mix. 
2. A realization that full-size Nutella cupcakes would be sugar WMDs. They'd take the tops off Mali's classmates' heads.
3. A preference for speedy buttercream frosting as opposed to finickier double-boiler options

You want to make them too? Well then:

Get some yellow cake mix. (Oh, come on. Yellow cake mix rocks.) Mix it up. Make mini-cupcakes with it. I recommend a barely-oiled silicone mold or cupcakelet papers.

When your bitty cupcakes are cooked and cooled, cut a divot from each top:

Fill each divot with Nutella
(Quarter is for size context,
divot cribbed from Baked-In.com)

Top with Kitchen Treaty's shockingly straightforward Fluffy Nutella Buttercream frosting.

Hold cupcakes in front of you while proferring, or put on a table and stand back. You don't want to get trampled. These bites are amazing.

Irony: Mali didn't like them. But she likes nothing except quesadillas, fresh blueberries, and Nutella from the source, so.

Please share and enjoy and consider yourself warned.

Suddenly She's Eight Years Old

This girl is eight years old today. This fiery sparkly spunky visitor from the planet Extroversia, who keeps both herself and those of us in the audience so very entertained.

Though she'd want you to know that she's not actually eight until 11:54 tonight. But it's her birthday regardless. And that means dinner at the Lobster Shack (because they make the best grilled cheese sandwiches, obvs), and a bouncy house party later this week, and that's all very exciting.

What amazes me, though, is how very little she requires to fuel her marvelous version of reality. When asked what she wanted for her birthday, she thought for a while and said, "Another episode of the Power Puff Girls?" because they're not on Netflix. And when a girl has access to the local public library and Netflix and one's house is full of cardboard boxes and tape and Sharpies and colored pencils and pens -- really, what else is needed, or desired?

Here are some of her created objects from just the past two days at home:

Go-Kart. Note booster seat-enabled caboose.

Go-Kart front bumper. (Who taught her to write
"Bow-chicka-wow-wow"? NOT ME.)

Unicorn sailing ship with a very long name
incorporating "Dawn Treader."

I do realize she might not always be this embodiment of carefree awesomeness and explosive creativity -- puberty does strange things to a person -- which is one more reason to celebrate who she is right now. And to keep my fingers crossed. And to relish her very self this very moment, as in this video about her "magic waterfall":

Sometimes I think she deserves a mother more like her -- someone whose imagination is equally wild and on fire -- but then, perhaps I'd contaminate her. Mostly I try not to overthink it, just relax and enjoy and appreciate and be grateful for having her in our lives.

Rock This Way

Leo went off Risperdal last month. We were going to transition him from Risperdal to Seroquel because the Risperdal was affecting his cholesterol levels, but during the meds-free part of his transition he did so well that we just ... kept him off. And are continuing to do so, with his doctor's full support. Most of the details are in the BlogHer column I wrote last week. In general, he's doing well. Some hiccups with having a hard time getting to sleep (Risperdal is soporific stuff) but they're minor and entirely reasonable for anyone who essentially just went off sleeping pills, and his sleep is not otherwise disrupted. Which is healthy for a growing kid.

I'm observing him extra-closely just now because we're a data-focused family. It's important to know how his post-Risperdal behaviors compare to those from past years, especially as the Halloween-birthday-Thanksgiving-Christmas season is challenging for him regardless, what with schedule disruptions, sweets, visitors, travel. If he's having a really hard time -- an uncharacteristically hard time, rather than reacting to seasonal circumstances -- we want to know.

So I'm noticing. I'm noticing remarkable things, like how he uses his iPad to manipulate music. He has always enjoyed using his tablets' icons (so friendly to visual types) to hit favorite beats and moments in music and videos. But if I wasn't noticing, or if like his more sensitive sister I found it difficult to tolerate the ensuing seeming cacophony, I might get irritated. And I might have missed the resulting patterns he's creating -- essentially his own, custom music compositions.

He strings together and then loops the introductions to songs like Everybody Wants to Rule the World and Right As Rain, alternating precisely, stopping before the vocals in each. Because those vocals don't match. But you know what does match? The two songs' propelling beats. They're mirrors, they make a pair. If he knew how to splice them into a mashup, I'm betting he'd do it. I'm guessing he might, eventually.

Until then, keep noticing, everyone.

Happy 12th Birthday Leo!

This boy, who was given a diagnosis of Extreme Cuteness about the time this photo was taken...

...is now this boy. This handsome 12-years-old-as-of-today boy.

We are going to spend his birthday -- and much of the weekend -- doing exactly what he wants to do. Eating cupcakes in his class. Going to his favorite Indian restaurant for dinner. Going to see "a movie!" if we can squeak it in -- possibly Wreck it Ralph, as certain folks appreciate its neurodiversity message. Staging a Quirky Kids takeover of a local jumpy house palace to celebrate the Leelo-ness of Leo. With pizza. And his requested "chocolate cake!"

And I will continue to marvel at how the sweet, cute boy above -- a boy who will not put up with a "boy" label much longer -- continues to defy the klaxons of doom that so many experts set off around him when the first photo was taken, who continues to grow and mature and gain skills and ... need us less. (*sniff*)

At 5:30 this morning, I heard his bathroom door slam and walked over to see light streaming out from under it. Leo was standing nearby in his bedroom, looking groggy. I stomped over to knock on the bathroom door and grouch at Iz for waking her brother up -- except lo, there was no one in the bathroom, because the light-turner-onner and door-slammer was Leo, who had needed to pee and just wanted to go back to bed, Mom. Leo, who didn't see why door slamming and leaving lights on were such a big deal. Who thinks I should know by now what 12 year old boys do as they wander around their natural environments. Who was giving me an sincere, bleary-eyed WTF look. Who did indeed go back to bed until it was time for his birthday blueberry pancakes.

Happy birthday, sweet boy.

(I can still write "boy," damn it.)

Rights and Compassion: Why I'm Voting for Obama

The baby boy in this picture will be 12 years old in four days.

Leo was born just a few days after Election Day of 2000. I had fully expected the election itself would be over and done with by the time our boy arrived (it wasn't), and had never thought that a slippery buffoon like George W. Bush could become president (e.g., he lost the popular vote). That election, and Dubya's country club-style presidency, popped the earnest bubble of beliefs in which I was living, made me realize I was taking the pervasiveness of democratic and liberal ideals for granted.

Still eager and dewy-eyed, I became convinced that all I had to do to convince someone they had placed their faith in the wrong candidate or cause was show them the facts, show them evidence. Because who wouldn't put their faith in what I considered demonstrable truth?

Twelve years later, I no longer believe in evidence as a trump card. Facts don't convince true believers, they make them retrench. Examples:

• The vaccines-cause-autism parent crusaders continue to deploy utterly tone-deaf misinformation copy-paste campaigns throughout the comments section of any mainstream article mentioning autism, unable to comprehend that, in perpetuating our culture's fear-and-pity attitude towards autism, they are undermining their own children's chances for future success.
• A woman I respect deeply told me with the full force of her conviction after we were dragged into the second war in Iraq that she believed Saddam Hussein's Weapons of Mass Destruction justified the war and were just waiting to be found (they weren't). She currently refuses to acknowledge the harm that will come to the LGBT community if Romney wins. And she's a smart, compassionate woman.

What can we do? I've been writing a lot about acceptance lately, and I guess another form of acceptance is understanding that some people cannot process what they don't want to hear. Acknowledging that true believers want things simplified and palatable -- they do not want to wrap their heads around complexity, even if they think they do, like billionaire Leon Cooperman -- who took two painstaking weeks to write a screed about Obama's "divisive language" that then turned viral, yet who considers our President's background as a community activist, law professor, successful author, & senator as "never having worked a day in his life." Yet I also know repeated exposure can bore through rock, and so ideally through rock-hard beliefs. I have to believe that people want to think, they just aren't always encouraged to do so.

For a while, I thought avoiding direct engagement or not citing names while persistently speaking out was the best way to get messages out. That if one must confront reductionist true believers, then a calm and professional attitude would enhance the very rightness of the right messages. Staying on message, unflappably, would eventually get through to ... if not the zealots, possibly those in the zealots' thrall. But, as we saw in the first Obama-Romney debate, behaving like an adult when the opposition goes on a By Any Means Necessary rampage makes one look flat, uninvested, and lacking in conviction.

So what is the right approach? I'm circling back towards speaking the truth and calling out falsehoods while avoiding outright smackdowns, the model Obama deployed in the second and third debates. I'm still working on it, because I'm an easily-riled hot head (e.g., anti-vaccination paragraph above). I can't stand by and watch people like Mitt "Tax Returns" Romney lie and evade and spin, and not call them on it. But I can avoid sinking to their level, can avoid treating people as unthinking, gullible sheep.

Twelve years later, we're all lining up to the polls again. Or trying to. And hoping that our votes will actually be counted. And I'm no longer that innocent expectant mother of 2000, who believed democracy and integrity would prevail because duh. I'm terrified that four years of Republican obstructionism will come to fruition at the polls tomorrow.

My vote is my way of speaking out in defense of what is ethical and what is just, a near-sacred duty as it means speaking for my children, who cannot yet participate. I do not know what their future holds, but if they are disabled, LGBT, unemployed, impoverished, or unexpectedly pregnant -- disadvantaged in any way -- I want them to live in a country that treats them with respect, dignity, and understanding. As fellow citizens. As the citizens their immigrant grandparents were able to become, via a process that brought every non-Native American to this country, FFS. And I want that respect and dignity and understanding -- what's right, not what's soothing to believe or easy to hear -- to prevail in our country, now.

That is why I'm voting for Obama.

A Whale of a Tablet Tail

That parasite-looking attachment on the back of my Xoom tablet is a cool new product from Octa called the Tablet Tail. They sent me one to try out, and I do have to say: it is extremely nifty.

It suctions to the back of the tablet, then its flexible tail lets you prop the tablet in landscape or portrait mode. I use my Xoom primarily for watching Netscape videos or listening to podcasts while I grudgingly do housework, and the tail makes my tablet easy to prop up anywhere -- even on uneven surfaces (see below), which is not something cases with built-in stands are good at -- they tend to topple over.

The tail also makes a handle that's easy to grab (checking that the silver suction indicator tab is fully engaged first, of  course). I also tend to use the Xoom for social media pictures and video, and the tail doesn't get in the way.

I carry and use my Xoom all over the house, all day long. (We're a family of five. The housework is never-ending.) The Tablet Tail makes that all-day-long carrying-and-propping so much easier. I like the Tail. A lot.

There are caveats, of course. It needs a 3-4 inch diameter flat spot on the back of one's tablet to suck on to. This means it doesn't work with my son's iPad's current Trident Kraken protective case, as the back does not have any flat areas of sufficient diameter. But it works well on the back of tablets themselves, which is great for Xoom-users like me who rarely use cases, or iPad users with Smart Covers or any tablet user with flat-backed plastic or metal cases.

The other caveat is the price -- currently $49.99. I know there are gear heads for whom cost is a secondary consideration, and for you folks I say Go For It! I think it's also an excellent stand-case substitute for folks who only use their tablets at home, for reading, social media, and video-watching, and who either have no kids or are adept at keeping their tablets away from their kids. Or for families whose kids are unlikely to Hulk Smash! or drop their tablets. But the price is a bit of a surprise to me.

Still, I use my Tablet Tail all day long. It does exactly what it's designed to do, it does it well, it is one of those little adjustments that makes my life easier. It's a good product. If the price point is not a hurdle for you, then I recommend it.

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Disclosure: Octa gifted me our Tablet Tail. However, I only write about the products I really like because honestly, who has the time?

Competence and Constant Vigilance

A persistent hindrance to increased independence for people like Leo is parents like me overlooking opportunities for self-care and competence. Sometimes this happens because we find it quicker and easier to take care of breakfast preparation or our kids' tooth brushing ourselves, sometimes because in our day-to-day rush we forget to check in and see if new skills have emerged. It takes effort and vigilance to give Leo the chances he needs to demonstrate competence.

Like yesterday, when Leo asked me for mango juice. I was about to pour it for him, but instead stepped back and asked if he wanted to pour it himself. Which he did! He even put the lid back on the carton (a twisting/screwing motion) with one hand while drinking his juice with the other. That's some serious bilateral coordination. Which I would have missed, had I not slowed down and handed over the reins.

I consider scenarios like this part of Autism Acceptance: being able to appreciate that it is totally fucking awesome for my nearly-12-year-old son to pour his own juice, without any bittersweet undertones. This is not denying Leo's reality, or mine. This is understanding what autism means for Leo, and adjusting to his natural patterns of rhythm and growth -- patterns which have nothing to do with most kids his age, but which are far from rare either currently or historically.

Part of the difficulty many people have with Autism Acceptance is understanding why it is not an attitude of surrender or denial, to which I can only respond with our own experiences:

I'm not only constantly vigilant about Leo's competence, but also his safety -- when he's excited or upset, he likes to whoop and gallop away from me without necessarily noticing dangers in his vicinity. Dude, I'm on that -- who wouldn't be? When we're out in public, we're a hand-holding duo; if he's in an excitable mood, we stay home and he can gallop all he wants. I accept that.

I'm constantly vigilant about his education and needs -- we're re-evaluating his ABA home program now that our state has mandated insurance coverage, and also pushing for an AAC evaluation. We're re-gauging his reading readiness. We've just finished setting up a special needs trust with the understanding that Leo's long-term educational and living needs will likely be different than many -- but not all -- people his age. I accept that.

The most important part of Autism Acceptance, however, is understanding that Leo is not an empty shell, or a changeling. There is not some alternate Leo trapped inside his body, waiting to escape. Leo is Leo. He is the person he was born to be. He is his own awesome self. I accept and adore him just as he is.

Apps & Autism: Presuming & Expressing Competence

I do my best strive to presume, cultivate, and recognize Leo's competence. To give him opportunities to access information and entertainment. To always consider what is possible, what he could do, how he might thrive -- and not worry about whether we see any kind of  "return on investment." That is why we listen to a variety of music, that is why we listen to books in the car, that is why I chuckle with admiration whenever he punks or outwits me, that is why I always try to give him a few extra beats to process and then act on input.

And that is one of the reasons I love watching him use his iPad, because it lets him explore and demonstrate such competence, whether he's reorganizing icons so his most-used apps are all in the same folder, realizing he can find songs in iTunes via their album art, or practicing typing via finding his favorite videos on YouTube. All independently initiated activities. All evidence of awesomeness.

Leo playing Thidwick the Big Hearted Moose

Awesomeness evidence is also why I get so excited about apps that let Leo express his competence. This is why I have always been such a fan of Oceanhouse Media's OMBooks, especially their Dr. Seuss series -- Leo can explore beloved books however he likes, whether he prefers to have the books read to him automatically, or "read" them himself by touching on each word individually. I've written about this before, many times.

But the reason I appreciate Oceanhouse Media's work so much is that, even while producing a constant avalanche of apps -- they just released another Leo favorite,  Thidwick the Big-Hearted Moose --

Leo & Oceanhouse Media president Michel Kripalani

They also constantly strive to make their existing apps better and more useful. So now apps like Dr. Seuss's ABC, Green Eggs and Ham, and the Cat in the Hat allow users to record their own voiceover. Which means that Leo -- who knows nearly every Dr. Seuss book by heart -- will be motivated to practice reading out loud. He'll then have evidence of his competence, his abilities -- which I love seeing, even though I neither expect nor demand that evidence. He gets to feel proud and happy, and have fun doing what he loves.

We'll also be able to record favorite people reading his favorite books, so he can feel like his grandparents or uncles or aunties are still here, even when they're far away. We'll be able to share those recordings with friends and families who have the same apps. We could -- if we so chose, and assuming it would be within the boundaries of fair use -- play the Dr. Seuss audiobooks we've spent years listening to in the car, and record them right into the app, so Leo can have all of his Dr. Seuss worlds (Green Eggs & Ham and Dr. Seuss's ABC read by Jason Alexander! The Cat in the Hat read by Kelsey Grammer!) finally fold into each other for ultimate happiness. Because that's the kind of experience that motivates him. That's the kind of feature that keeps him pushing and learning. And allowing pushing and learning and demonstrating competence to happen -- keeping apps evolving to better serve kids like Leo -- is something for which both Leo and I are both profoundly grateful.

This is how all apps should be.

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Disclosure: I requested and was gifted a copy of the Thidwick app. However, I am not affiliated with or compensated by Oceanhouse Media in any other way -- as always, I only write about apps I think really make a difference.

Analysis of an Autism Parenting Fail

*Not* from the team photo shoot.

Yesterday was Leo's soccer team's photo day, but Leo ended up not participating in that photo shoot. Instead, we ended up leaving -- with me in tears, and Leo frantically upset. All due to bad decisions or not being observant enough on my part, and so all of which could all could have been avoided. Let me wallow in hindsight and tell you why.

1) Leo hasn't been sleeping well lately, often getting up at 3 AM then staying awake all day until his usual bedtime. This means both he and we (Seymour and I alternate hanging out with Leo in the mornings) are sleep-deprived and so not at our best, decision-making-wise. I should have put more thought into whether Leo would be able to tolerate an activity as chaotic and demanding as a team photo shoot.

2) Leo usually has a Sunday respite session with Therapist V, his former linebacker best buddy ever (V is strong enough to pick Leo up and sling our boy over his shoulders; Leo adores roughhousing), but yesterday their session was cancelled due to matters beyond anyone's control. So that made things harder for Leo as well -- the reliable, soothing, predictable structure of his Sunday was doubly compromised, first by V's absence, then by the photo shoot.

3) Putting on his uniform after already playing on Saturday and then not going to the usual soccer field (the shoot took place at a park nearby) was very confusing, and possibly a trigger for Leo. I should have taken more time, made more materials, explained better what the photo shoot was about, how it was going to be different from a game day. But, because I was tired, I didn't take the time to prepare him sufficiently. That is on me.

4) Anything scheduled during lunch is bad. Leo lives for lunch. Since he'd been up so long, he'd already had two breakfasts by the time we left for the photo shoot -- one breakfast rather late in the morning -- and I figured I could push Leo's lunch back accordingly. Bad idea. Lunch is at noon, no matter how many breakfasts a boy has had. That lack-of-lunch was the breaking point for Leo. I understand this now.

It was only after we'd already arrived at the park and Leo started making his displeasure known (slapping the picnic tables, yelling) that I realized my son was approaching a perfect storm of Hell No. But, as he's also maturing, I tried to encourage him to power through, to see if he could take a picture anyhow.

No. He was having none of it, and became increasingly vocally and physically agitated. I brought out various things that usually calm him -- iPad, fruit leathers, music -- but he was very much All Done.
Then one of the other parents then told him he needed to calm down and behave, which I get from an It Takes a Village perspective but which is of absolutely no use with mid-meltdown autistic kids like Leo. That's the point at which I lost it.

I already knew I'd failed Leo, was already berating myself for setting him up to fail in public -- but having a semi-stranger then judge him for being out of control was more than I could take (if you don't know me IRL, even small-scale in-person confrontations makes me cry, unless I'm righteously furious). I put on my sunglasses to cover my streaming eyes, told the coach we were leaving, and we left.

We hit In-N-Out on the way home, shared French fries and a shake, and went home. Leo changed his clothes and headed straight into our pool. And then happiness reigned. His day had normalized. He was in control. Lunch had happened. Things were as they should be.

I'm writing this down because I think it's important to show lessons learned in [autism] parenting, even if they make me look bad. Because even though I know and understand so much of what it takes to help Leo get through his day, I need to stay mindful of when and how things can be harder for him. Being off schedule in any way is confusing and stressful, as is sleep deprivation. And when I'm feeling stressed or overwhelmed, that is when I need to be extra-vigilant about ensuring that Leo has proper supports. He depends on me. As capable as he has become, and as well as he has been doing in so many stressful scenarios, it is my job to smooth the path in front of him. He deserves better than being dragged into a public meltdown.

He failed because I failed. And it made us both miserable. I wish I hadn't had to re-learn what I already know, and at my son's expense, but I hope our lesson can help other folks avoid such clusterfucks.

Leo, I love you, and I'm so sorry.

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The only bright spot in the morning: I got to see and hug my dear friend MB, whom I've not seen in person for years. xo, Lady.

My Son the Punk

This boy has reached a new milestone, that of punk.

When his older (new high schooler, obviously far cooler than we will ever be) sister decided to start calling me 'Mom' instead of 'Mommy,' and I protested and called in Leo for backup, asking him what my name is, did he say "Mommy"?

No, he replied, "Mom!," then laughed impishly and right in my face.

Punk.

When, after working with him for weeks on washing his hair using a hand-held shower head, and evaluating and fretting over whether it is reasonable to have him hold said shower head above his shoulders and move it all over  his head (crossing the midline, for those who get the OT term), I turn away from him for a moment after he's lathered his head, did he sit there complacently and wait for me to instigate the next step?

No, he took matters into his own hands, turned on the shower with the shower head still held in its bracket, and rinsed his hair his own damn way by standing up, moving his head, and turning his body. No OT, shower-head-raising, or midline-crossing needed.

Punk.

When iOS 6 eliminated his YouTube app and list of favorite videos, did he complain? Yes. But did he stop there? No. Now he's working on typing in the names of all his favorite videos, finding them, and reinstating them. Because he's awesome.

And not just a punk.