9.30.2012

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.

9.24.2012

Depression & Autism Parenting

When TPGA republished my BlogHer essay Autistic Lives: Not Less Valuable, about the murders of George Hodgins and Daniel Corby at the hands of their parents, one commenter criticized my lack of understanding for the parents' mental states, writing, This was not just a mother not willing to be as strong as you.

That comment was a bifold WTF to me. It dismissed the point of my essay (the horrifying dichotomy in our society's perception of parents who murder their children: with disabled children, it's considered understandable because of caregiver stress; with non-disabled children, it's considered unforgivable). But that commenter was also making a huge assumption about me.

Because I'm not strong. I'm lucky. I have a great husband, great family support, Leo goes to a great public school, he has great respite -- and I belong to great, neurodiverse autism communities both offline and on. Those communities are generous in sharing their experiences and helping me learn to both understand Leo better, and be a better parent to him. They are strong. I am not.


I'm actually prone to depression, and have been in a serious funk for months. If you know me, you might have noticed -- I'm usually a 78 RPM girl, but right now I'm set to 33 RPM. You might not have noticed if you're only used to dealing with my awkward or brusque sides, because those haven't changed. Or you might not have noticed unless you're waiting on a deliverable that requires me to synthesize multiple moving parts. You might not notice because I can rally in person if you're not expecting much in the way of coherent thinking or speaking. Small talk? Coffee? Beer? Retweets, Facebook posts? Sure. I just can't process much that's non-linear at the moment.

Thing is -- and I want to be clear on this -- my depression has very little to do with being an autism parent. Some of it has to do with parenting, most has to do with not being able to fix very, very broken matters: divorce affecting people and children I love, or seeing the best people in the world wrestle with cancer. There's nothing I can do about the divorces and disease. And I'm a fixer, a doer. Helping, fixing, signing off, pressing send, checking that box and moving on to the next task is what keeps me fulfilled and happy.

Not being able to fix things fucks me up -- there's no non-NSFW way to describe it. That is why, when Leo was first diagnosed with autism in 2003, and media portrayals of autism were all horrorshows and head banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I usually sleep like the dead), and occasional pulling my car over because the rules of the road would cease making sense. I was depressed because I thought my son was broken, and I didn't know how to fix him.

And it took years, but I eventually realized that parenting is not about fixing. It's about supporting, accepting, finding best practices, and fighting for your kid's rights. It's about unconditional love. And it's about putting your kids first. About making other people see your kids -- and kids like them -- the way you do, the way every kid deserves. About accepting the changes kids bring to your life, even if they weren't what you expected.

I don't want any autism parent to have to go through the new diagnosis depression grind I did; that is why Thinking Person's Guide to Autism came into being. But even the most fabulous autism book in the world can't magically fix everything for parents as long as our society continues to portray autism as The Worst Possible Thing That Could Happen To Your Child. There's still the initial shock to get over, accepting that this Worst Possible Thing could happen to you. And then, hopefully, the epiphany that autism is not The Worst Possible Thing, after all. That you're all going to be OK, and that you're not alone.

But even parents who ramp up quickly to accepting their child as autistic still need time to adjust. Anyone does, when they go through a significant reality rearrangement. Depression and anxiety are understandable during that transition. And anyone who is depressed deserves help. The need to get help is all the more critical when the depressed person is a parent or caregiver.

For me, the tragedy sets in when those parents -- through isolation, lack of support, or through communities that reinforce negativity -- continue to believe that autism is The Worst Possible Thing, are never allowed to consider the joy so many autistic children bring to their families, never get to make contact with the many many amazing autistic adults whose stories and very existence defy mainstream negative autism stereotypes. I don't know what I'd do or where I'd be if Leo and I didn't both have supports and understanding and community. And I worry, a lot, about the children and families who don't have what we have. That is why I do the work I do.

Anyhow. I'm now a veteran autism parent, and I'm lucky. I don't worry over autism as a nasty boogeyman that I can't fix, or could fix if I tried hard enough (a quixotic and demeaning approach at best) -- I worry about my beautiful son, who is autistic. I worry about what he needs from me, and whether I'm a good enough parent, a strong enough person to provide it. Mostly I just do my best to support him.

It's not always easy. Sometimes it sucks. Like right now, when Leo can't be in the same room as his little sister, because he's in an aggressive phase, and she's a shrieker. But you have to understand that  my resulting, heart-cleaving sorrow over Leo's and Mali's standoff is no different than when Leo's sisters are locked in an impenetrable yelling cycle. My sorrow comes from the helplessness of not being able to instantly make everything better for my children, these three people who were ripped from my soul and whose unhappiness has the power to destroy that soul entirely.

And then there's those other areas of unfixability. I will say that I have learned a lot this year, about realistic expectations, about the folly of projecting my own mindset and values onto others. Narcissists don't want to hear that their ongoing choices are profoundly disastrous and that the only role they currently hold in their extended family is that of emotional wrecking ball. If a sociopath gets off on manipulating people, then letting them know I'm angry at them is exactly what they crave. If a person who has been indulged and never held accountable int their entire life is still not able to fathom why other people don't just give them what they want, all the time, why is that a surprise to me? I guess I can't get over the way those scenarios are affecting the involved kids. Much the way I can't get over anyone ever thinking it would be understandable to murder an autistic child.

I'm going to be fine, I've waited out periods like this before. When my kids aren't trying to take each other out, they are my joy and solace, as is my husband. My friends and loved ones' cancer treatments have all been successful, so far, though they're not over. The divorce scenarios will either get better or they won't -- they're out of my hands, all I can do is support the parties involved however they'll let me, and give thanks for any positive steps. And I have my techniques for keeping my nose above water -- I do a crossword puzzle every morning to keep my brain from rotting out entirely; I listen to our local, reinstated classical music station in the car; I make myself checklists of tasks that result in physical manifestations of done-ness, and allow myself to attack them in phases if need be. It all helps.

I'm not strong. But I'll get by. Sometimes, that's all any parent can do.

Leo's iOS6 Upgrade: A Bumpy Ride

If you haven't upgraded to iOS6, and you or your child are YouTube fans, then let me warn you: the native YouTube app is all gone in iOS6 for iDevices.

This is a huge deal for Leo. HUGE. He is pissed. His page of Favorite Videos? Also all gone. Irretrievable, because his pre-iOS6 iPad native YouTube app had let him favorite his apps without signing into an account. That data, that selection of videos, was only recorded in the app itself. So, *poof*

Yes, we can still access videos in Safari, or by using the (much crappier, iPhone-not-iPad-native official YouTube app). That's not the issue. Leo (and I) are mad because -- once again -- Leo's custom content has been erased from his iPad with no warning, due to an upgrade.

I suppose I should have been more patient, should have read the fine print, should have waited a few days to upgrade, to see just what kind of hiccups the autism and special needs community would start warning each other about. But I didn't, and while I read plenty of information about iOS6, somehow I missed the YouTube deletion news -- and now Leo's favorite videos have vaporized. And it sucks. Because in YouTube's own app, you can only access Favorites once you've signed into an account, which makes Leo doubly dependent on other people -- someone to set up the account, and someone to refile & retag all his favorite videos.

I hope can relocate and properly curate all those videos, because Leo sure as hell knows exactly which ones they are -- he spent months selecting them. And if they aren't all the right videos, in the right order, I'm going to hear about it. For a very long time.

Mostly I just hate anything that suddently takes away Leo's independence and makes him dependent again, even if it's temporary. It's disorienting, plus he's already dependent on other people for so much in his life -- a fact that is often very frustrating for him.

Probably this is why I'm leery of Guided Access, even though many folk (especially therapists and teachers) are excited about its ability to restrict users to a single app until a gatekeeper person restores full access. I understand that, because of that restriction, Guided Access is eroding arguments about iPads not being dedicated AAC devices, and may make it easier for those who can afford $499 iPads but not $7000 dedicated AAC devices to get insurance or school or other external funding. I just hope the gatekeepers will be mindful.

If you want to see how Guided Access works, here's a video by GeekSLP:



Have you upgraded to iOS6? Why or why not? What do you think?

9.22.2012

Autism & Sharing Social Skills Insights

I always though parenting three kids would be interesting, but I never thought it would be so “May you live in interesting times” interesting.  But anyone who’s ever taken on this parenting gig knows that  being a mom to three kids with entirely different social skills profiles -- one intensely thoughtful teen girl, one exuberantly autistic tween boy, and one explosively extroverted seven-year-old girl -- means boredom is … not an issue. This gig is fun! And maddening. And so, so rewarding. 

It also provides constant opportunities to learn, to look back on what we’ve done and experienced; to think about what went right -- and what went not-so-right. To share those experiences with other parents who might need advice, or to learn from other people -- not just parents -- who might have advice to offer themselves.

That’s why I’ve been writing online about parenting and autism since 2003 here at www.squidalicious.com, as BlogHer’s contributing editor for parenting children with special needs since 2009, and as co-founder and senior editor of Thinking Person’s Guide to Autism since 2010. Sometimes to vent, mostly to share information, Borg-style -- though the collective and hive mind that is the Internet.

Over those years and through many posts -- and I just passed 2,500 entries on this site, if you can believe it -- my writing has been autism-focused, or autism-sibling focused, but not always. I’m too much of a distractible geek, and my life and kids are too interested and complicated, to keep everything tuned to a single channel.



This. Is. Neurodiversity.
Lately I've been interested in how iPads can foster social skills both formally & informally (including investigating apps for all ages & abilities, for their stated purposes and beyond), how we can learn from autistic adults able to articulate their past and current social experiences, how to handle exchanges between kids with differing quirky behaviors when one kid finds the other kid’s quirks bothersome, how to teach others to not talk about our children and their disabilities as though those children are not present, how to empower our kids to stand up for themselves … the list is a long one, and this is just a sampling. I'd enjoy hearing your perspectives as well.

Underlying everything I talk about, however – the root of all social understanding, and what I try to keep in mind and also teach my kids to understand -- is the idea that Behavior is Communication. This seems like a simple concept, and it is fairly logical – but it takes effort, because we are taught to pay attention to what people say, rather than consider what their behavior may be saying. 

But understanding how behavior influences communication makes fruitful social interactions so much easier. I can’t really expect my son Leo, who like so many autistics often struggles to produce spoken language, to have a successful spoken social exchange if his lunch is overdue -- he’ll be both hungry and off-routine. This means the energy I want him to use for social interactions is instead getting transformed into anxiety over his empty belly and the broken social contract regarding the time at which that belly gets filled.  I can’t expect Leo to simply do what I say at that point, and tell me what he wants, if his behavior is indicating distress so significant it undermines his ability to speak.

 It's unreasonable for me to insist Leo tell me what he needs in such scenarios, and I need to both understand that, and know how to help an agitated autistic boy return to a calmer place. Maybe, then, we can resume exploring supporting his social skills. 

I realize my writing on this site has been spotty of late. I'm going to try to be better about that. In the meantime, I want to get to know more about you, or your kids if you have them. And I want you to understand what I’ve learned from thirteen years of parenting mine.

9.19.2012

Toca Band: Best Music App for Leo Ever

We're a family of Toca Boca fans, which is no secret -- I'm pretty sure we own all their apps, and we jump up and down every time a new one comes out. So: Yay! Toca Band arrives today!

Leo has always loved music apps, but this one is special, this is the one he's been waiting for -- as he can show you himself in the video below, which shows him diving right in, seconds after opening Toca Band for the very first time. Watch him go:


Do you see? Do you see how easy-to-use -- and fun -- and open-ended -- and goofy -- and creative this app is? Yet still structured enough for Leo to feel comfortable exploring? He doesn't need to read; he doesn't need to understand the characters' scat-style, often word-free "singing;" he doesn't need to stop and figure out how to use anything. The swipe-based selection menu at the bottom of the screen is easy for him to navigate, and to pluck characters from and then plonk on stage in different musical combinations. He enjoyed checking out all the different sounds/beats/loops, then popping the characters on the center stage star, exploring their individual percussive or vocal or musical characteristics and how they meshed with what was going on on the main stage -- and then popping right back to the main screen.

This this this. This is how apps should be designed. If you ever contemplate creating apps to delight and entertain kids -- all kids, including autistic kids like Leo -- then you need to take a long, hard, detailed look at apps like Toca Band, and start trying to understand why and how they work.

Leo's little sister Mali was waiting behind her brother the entire time he was playing the new app, desperate to have her own turn. And when she got it, she immediately started experimenting with innumerable musical combinations on the main stage, running over and asking us to listen to each one -- and they were fun to listen to, she was able to get really creative. Seeing what she and Leo could do made me itch to dive in, too. In fact the only reason I'm not playing with Toca Band right now is because I'm typing. The only reason.

The Toca Band "Stage." You can swipe the characters below to select different ones.
Placing a character on the center stage star opens up their own screen
-- with more musical options.
The only caveat I'd give is that if your kids push back against requests to turn their iPad's volume down (ahem, my progeny), then this app is yet another argument for Apple to enable a global iDevice volume limiter. Especially if your child gets really explorey with multiple musicians and center stage percussion characters, because Toca Band makes achieving dissonance and cacophony just as simple as harmony and counterpoint. All valid musical expressions! But not ones a precoccupied parent like me is going to want to hear at top volume for hours on end.

As device volume limit is not within the developer's control, I have no problem stating that Toca Band is a fabulous app. It is a Shining Example app. It is an app that lets my son be smart and creative. It is an app Leo adored on sight.

----

Disclosure: Toca Boca sent me a preview code for Toca Band. But, as always (and since Leo's iPad has 450+ apps) I only write about apps that really stand out.

9.14.2012

Oh Yeah: 1400 Mile Autism Family Road Trip in 60 Hours!

Can a family like ours roadtrip from San Francisco to Portland and back again in 60 hours? Of course. But should we drive 1400 miles in under three days? Under the right circumstances -- and for the right people -- absolutely.

Traveling as a family hasn't always been reasonable for us. We had a long stretch in which Leo didn't do more than the occasional day trip, so unimpressed was he with the demands of going off-routine. But he's grown, he's matured, and he's now become the most patient and intrepid traveler of our group, enjoying the adventure of seeing new scenery roll by.

And SF to PDX, that is a scenic drive. Especially on Labor Day Weekend, with some of the best weather we've seen all year. And especially if you take the Redwoods route along 101.  Because then you can drive through trees!


The drive-through tree at Myer's Flat may look shredded, but I assure you it is very much alive.


This is what the inside of the tree looked like through our sunroof. You can see some of its greenery out the top.


And this is what the drive-through tree looked like through our window! You can't necessarily tell in the photo, but Leo is laughing his ass off at seeing the inside of a tree through the car window. I, on the other hand, am not laughing because the clearance on either side was less than 3 inches (finally, my background maneuvering big pickup trucks over tricky overgrown Oregon logging roads paid off!).


We enjoyed the various redwood structures, including playhouses built inside giant stumps.



But by far my favorite redwood activity is wandering among the giants themselves. The kids warmed our hearts with comments about being on the forest moon of Endor. And we saw two families much like ours who appreciated big open path-based spaces for wandering and wondering.


We also marveled at the undersides of fallen stumps, so those recent like sea creature firework explosions.


They're just so damn big! The giant below was nearly 400 feet tall when it fell in the '90s.


Most every part of California north of Healdsburg made us want to stop and get to know it better, more so as an acquaintance recently took his family-like-ours camping along the very same coast, and highly recommended it. We need to come back, spend a week or so -- or more -- out in the redwoods and the isolated coastal areas where a bit of happy whooping and the occasional yowl of NO from our boy won't bother other campers. But we had to get to Roseburg, OR by the first night's end. So, onward we drove. Though we did celebrate hitting the state border.


We went to Portland to celebrate a friend's milestone. And we knew they would be celebrating with a rambunctious, kid-filled party. So we asked around if anyone would want to come with us to help make sure Leo's needs were met. And guess who volunteered? My wonderful co-editor at TPGA, Kassiane. She and Leo (and the whole family) got on just ... so well. Makes me sniff tearfully, in thinking how rare and precious it is for us to hang with folks where everything (geekitude and autism) is instantly grokked. Do you know how many people will keep talking with Mali about her favorite imaginary precious metal/gem cupcakes and their variety of possible toppings after the first five minutes? Damn few.


I think Leo & Kassiane liked each other, too. (Thanks so much for being awesome, K.)


Our hosts, some of our very most favorite people on the whole planet, threw a hell of a party. It aches to think how rarely we get to see them, how much we love them -- that is why the trip needed to happen. And their house was so amazing to me -- it's such an adult's house. Everything tidy, maintained, and lovingly geekified (they're both scientists). Their kid's room overflowing with Lego, books, and specimens (he's his parents' child), but ordered. Everything so distanced from Martha Stewart (bah) but so close to my mind's eye's 'real' house. Good to have goals, good to see people living the domestic dream. (I have been pulling the slo-mo version of the Augean stables on our house ever since.)

The kids wanted to stay forever, in that house of bunnies and turtles and bonsai trees and jumpy pool slides and a tree swing. I did too. Unfortunately Leo fell off the swing and scraped the side of his face. Since it's hard for him to leave scabs alone, it's still healing. But we've found he picks it less if we stop telling him not to pick at it, poor guy. And I am once again grateful that Leo is a healthy, not-terribly-accident-prone kid, because I don't like thinking about the decisions we'd encounter should he be unable to comply with treatment and recovery from a serious injury or illness.


We turned around and headed back south right after the party, so we wouldn't have to do PDX -> SF in a single day. We stayed in Eugene, which always seems such a pleasant place to me. Our hotel was right alongside the Willamette's inland delta, which would normally have us all out birding -- but alas, our breakneck schedule. NEXT TIME.

Leo is a fan of hotels, too. And newly invested in piloting roller bags, which is A-OK with me. One of his former OTs remarked on Facebook that this is a good way to provide proprioceptive input, so hey.


The schedule stomped the kids pretty hard, good sports though they were.


We took the (mostly boring) I-5 route back, for expediency purposes. It was good to say hi to Mt. Shasta up close after so many years, and we chuckled at Ashland -- such a doppleganger for Sebastopol (but all we had to do to find a good coffee & sandwich shop was to stop randomly along the main drag, so, not complaining).

When things got truly flat and dull south of Redding, Iz livened matters up by defying orders and letting Mali have her first dose of caffeine. Sigh. Thankfully our youngest put her energy into READING REALLY FAST instead of activities requiring social reciprocity, as we were all well and truly burnt by then.


Does this mean our trip was easy? No. This was an exhilarating but exhausting blue moon-worthy excursion (note blue moon on the eve of our trip). My husband is a saint for coming along -- he does not share my fondness for road trips of intensest intensity, but he couldn't pass up the chance to see our friends, or the Northern California redwood & coastal scenery. 

We also had the complication that Leo is currently In a Mood regarding his little sister, and cannot sit next to her in the car. So Leo got the shotgun seat, while the non-driving parent sat in the back. With this accommodation, and as long as we were mindful to keep the two kids non-adjacent at all times, things went smoothly.

Would I do it again, given the wonderful scenery and friends (and family)? Oh yes. Gratefully.

9.10.2012

Reluctant Soccer

Can you tell which player is Mali? Note that the ball is in active play.


This is her as goalie. Sigh. I'm not sure soccer is her thing. She says she loves it, but this is the age (3rd grade) in which silliness stops being tolerated by teammates and coaches and other parents, even if the purveyor of the silliness can't help but put on a performance whenever possible, and finds standing around punctuated with bursts of confusing action less preferable than said performing.


But, just today she got to perform in earnest, when she tried out for her school's play. She was required to sing a one-minute song, and act out a one-minute monologue. For the former, she chose Make 'Em Laugh from Singin' in the Rain; for the latter, Gollum's argument with himself from LOTR (she was enthusiastic but slightly tone deaf for the former, suitably creepy for the latter). The theater company is a serious one, but they also accept all actors who audition. Mali attended their theater camp this summer, and they were able to channel and guide her energy with good results. 

I'm hoping it will be a better fit than soccer. I hope nothing soul-scarring happens to her in soccer.

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