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.
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.
Every time we break this stylus out in public, folks first get perky over using a brush on an iPad, then ooh and aah when they actually use it -- it's fun and, well, soothing. Especially when used with a really excellent product like the spare, elegant ink brush drawing/painting/writing app Zen Brush.
Leo enjoys goofing around with his Nomad Brush in Zen Brush (above), and the combo makes practicing writing a little bit easier. He can practice his stylus/pen/pencil grip without having to hold a piece of paper in position, and while the stylus glides freely over the iPad's glass surface without any literal drag (video below).
The Zen Brush interface is simple: three ink colors (black, gray, light gray), two eraser colors (white, gray), and a slider for brush size. I've yet to come across a person who didn't get a kick out of using the Nomad Brush/Zen Brush combo -- and I've brought them to several iPad workshops and conferences. Plus, all drawings in Zen Brush look good!
My "is this thing on" experiment
Leo copying me writing "bread"
My eldest's Sugar Glider.
She's a bit obsessed with exotic pets.
Mali's Twin Houses. The girl does have
a keen sense of balance and composition.
LOVE character calligraphy, by an iPad workshop attendee
Self-portrait by Steve Silberman. Love it!
One caveat for each item:
The Nomad Brush Mini is tiny. Very tiny. If I don't track it and put it back exactly where it belongs, it vanishes (and in fact I'm in a bit of a panic as I type these words).
Zen Brush has positioned their no-undo, page-clearing trash can icon in the lower right hand corner of the screen. This northpaw has accidentally tapped & deleted several masterpieces.
Other than that, have fun.
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Disclosure: I was given our Nomad Brush by a company rep, with no strings attached -- we really do like it that much. I purchased all cited apps.
I was on a slightly guilt-tinged vacation this week. Couldn't you tell? (You could if you were expecting any kind of correspondence from me.) Seymour and the girls and I had a lovely time boating with Seymour's folks in the San Juan Islands while Leelo had the time of his life at camp (I'm picking our boy up this morning, the rest of our family remains afloat). Here are the three posts I sent hurtling out onto the internet from the boat:
Being an autism parent has always been a convenient way to laugh off my social ineptitude. But what if I'm more than just quirky? I came home from IMFAR determined to explore the matter. The first thing I did was take the AQ (Autism Quotient) test. I was careful not to exaggerate my responses, taking the milder options when unsure. I still scored 32, above the test's threshold. What does this mean?
Some folks have complained that it's dismissive to claim we're all on the autism spectrum. Since I'm grumpy about no longer being on the high seas sans responsibilities or drinking 25 year old vintage port, I've been rather irritated by those comments -- and since I'm a rotten commenter I'm just going to repost my response here:
I think some folks are having trouble reading past the headline to the conclusion: the more information we all have about ourselves, the better.
And I don't think we're all a little autistic (or all a little bisexual, for that matter). I think those spectrums have poles, and while the paths between the poles aren't necessarily linear, we're all somewhere on them. My hope is that this [post] helps people think more inclusively about our commonalities as well as our differences.
The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can't possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPadhelps, but I still worry that -- as has happened in summers past -- it won't be enough, and Leo's behavior and abilities will keep disintegrating until school resumes at the end of August.
So, understandably, I'm scared of summer. But I also think it has a lot of potential. It won't all be minefields
I was surprised at how much I needed to revise the essay in just two years, in all-positive ways. Leo's behavior is on a such a more even keel (and I'm two years farther away from Leo's traumatizing -- for him and me -- wrong-medication winter of 2008), our boy has started traveling again, we no longer have to stake out his camp office overnight to get him a 1:1 placement, and damn, he's got that iPad. This summer should be a good one.
Part of the intent [of developing iAdvocate] was to help the parents who confront the [potential educators or administrators responses to parent requests] statements for the first time and completely shut down. We really want to help those parents get their feet in the door!
...
Also, the concept of an advocacy tool has been very interesting -- there are lots of other contexts in which there is an information differential or a power differential in which something like this could be useful, for instance working with immigrant families. I feel like we've developed a nice model.
Yet another example of how iPads and iDevices are so much more than AAC -- and are supporting children and adults with special needs in ways no one had anticipated. When are insurance companies going to start funding the devices already?
Off to pick up Leo from camp. Have a lovely weekend, folks.
Two years ago, my family hit a financial rough patch. We weren't alone in being broadsided by the free-falling economy, and we weren't as badly affected as many others, but it wasn't good. I needed to find a job, one to supplement our income, one that could keep the roof that we'd gambled everything on over our heads.
But who would hire me for anything other than short-term writing or editing gigs? What kind of company would take a chance on me, would risk a position on a frantically busy mom-of-three who was already juggling several other projects?
And I'll tell you what: I'm not the only person they've bet on. Every time I go to a BlogHer event, I encounter more BlogHer employees who've been plucked from the Blogosphere. Wonderful people who couldn't deserve it more, who made me even giddier to be a part of such a fast-thinking, community-centric, resource-optimizing organization.
Since I started my BlogHer job eighteen months ago, my husband and I have made a lot of changes. He has made managing and streamlining our family finances his part-time job, and he kicks ass at it (I keep telling him he should consult). We're budgeting better, and our finances have improved in general. I think we're going to be OK.
I've also been getting more speaking, writing, and consulting gigs, which are thrilling. And there's the fantastic Thinking Person's Guide to Autism blog-to-book project which will the set autism community alight once we get the book out -- in May, or June. It really needs my attention.
But getting everything done, and done well, means something has to give. In the past year or so, that something has been sleep. But now that our finances are more stable, that means ... the BlogHer job.
It's time to leave. It's time to pass on to someone else the chance I was given.
So, I'd like to thank BlogHer in general -- and producer Jenifer Monroe specifically -- for being there when I desperately needed support. And if, by chance, you encounter that rare person who doubts the Blogosphere's ability to make a real difference in someone's life, just tell them my BlogHer story.
When every day brings five or ten legitimately bloggable incidents, it's challenging to find time for that blogging, not without carving into my already dwindling sleep allotment. Which is the kind of health-averse action I swore, in public, on BlogHer, to start curtailing. So I'll start tomorrow. Right?
Here's what's been going on since the last post on this site:
My essay for The Thinking Person's Guide to Autism on Why My Child With Autism Is Fully Vaccinated elicited some excellent discussions, and was picked up and republished by the Shot of Prevention blog -- where the first commenter has already provided a beautiful example of the "I don't believe your facts, therefore I'm entitled to debate you" mindset. Um, no. Antivaxxers, you need to tighten up your sloppy critical thinking skills if you're going to step into this ring.
As long as I'm writing about The Thinking Person's Guide: our team is still overwhelmed by all the great writing on critical autism topics. And we keep having to delay book publication, because what else is an editorial team to do when its last three submissions are from Susan Etlinger, Holly Robinson Peete, and Kyra Anderson? (Where's your essay, by the way?)
I was on TV last week, on Comcast Home Network's Upside news program, along with a super-knowledgeable SLP from Leo's school; Jen gently suggested that perhaps I could consider taking care of my two-inch roots before going on camera, so I went ahead and dyed my lid myself -- so quickly that my first proper view of the back was on a studio monitor. The video should be up soon, on http://www.facebook.com/UpsideNews.
And since we're chatting TV, Seymour and his crew spent last Friday covering the punch-through of the Devil's Slide bypass tunnel last Friday -- the first new tunnel CalTrans has built in 40 years! Punch through pictures are coming; in the meantime enjoy his team's mini-documentary on the project.
You may get the sense that we have many, many projects going on, and you'd be right. It's all overwhelming my poor partner. So while I was contemplating taking Leo to Disneyland for his 10th birthday like we did for Iz, we will push that off until the Spring, or later. I've heard the Mouse is quite accommodating for kids with autism, and think that Leo would have a great time if we plan carefully and go during a less-attended day. Can you even imagine? A happy Leo Disney day? He hasn't been since before Mali was born.
Two last-week Leo milestones that distracted me from All Done Disneyland:
Leo received his first-ever invitation from a kid I didn't recognize -- a classmate! This happens all the time when sisters start a new school years start, but never ever with Leo. Not before. One more reason to love this wonderful new school of his.
He started soccer! He loves it! Real soccer, AYSO soccer, with a uniform and everything. A VIP team. Therapist V will be accompanying him for now, Seymour may take over depending on the girls' schedules. Because three kids with three constantly shifting soccer schedules? OMG. But I can't wait to post a pic of all three of them in their uniforms! Saturday!
Leo also managed to drop his iPod touch (not iPad!) in the toilet, insta-bricking it. Or so we thought -- until after 24 hours of drying out it spontaneously de-bricked! I had to restore it from backup and retransfer all the audio and video, but aside from a slightly listless battery, it has recovered completely. Whew. The iPad is wonderful, but it doesn't fit in my purse.
Iz managed her own aquatic device attack. Our printer is on the fritz, so she borrowed my thumb drive to take assignments to class, then forgot take said drive out of her pocket. Which none of us realized until the drive's components materialized in pieces, in the wash. But Seymour let them sit, dry out, reassembled them and -- boom! Another recovery. Here's proof: I used the reassembled drive to transfer a scan of Mali's latest potion recipe (left).
And since we're talking chemistry -- we love www.PeriodicVideos.com. It's like Mythbusters for the periodic table -- amusing and educational. It is very gratifying to hear the little children whine, "Mommy can we watch the video for Technetium please because it's the lightest naturally occurring radioactive element?" Though you folks are probably more interested in Mercury:
Iz's favorite school subject is life science, where at the moment they're studying cell biology. She keeps asking me to help come up with cell function analogies, but is starting to outpace me -- I don't have an analogy for endoplasmic reticulum, do you? Her teacher is slyly tailoring her material for her pubescent girl students; Iz has come home wide-eyed about the dangers of consuming too few calories, as her mitochondria need fuel to produce ATP. And she has to eat enough fat or her cell walls, which are composed of lipids, will collapse and she'll turn into a big puddle.
Iz has four teachers; Mali has two: One each for Spanish and English. I talk with both of Mali's teachers every single day after school, because our button-pusher is still seeing how far she can go with them, and as long as her defiant behavior persists, the teachers and I need team strategies. Part of Mali's challenge is being a very young first grader with a November birthday. Part of it is increased expectations -- first graders are expected to work harder than kindergartners, and she really liked the creative cruising along of kindergarten. Part of it is not being able to shift her great big personality into compliant classroom mode. But it's still early in the year, plus both teachers are experienced enough to wait her out and let her break herself in. For now.
Mali's an outspoken girl. And we're working on that, in helping her figure out the distinction between assertive and rude. It's a fine line to walk when one is five years old. An example: I took Mali, Iz, and their cousins Danielle & Elise to see one of their heroes, the irrepressible Jenni Holm (Baby Mouse) at a local book store. Jenni did a series of drawings for some of the kids in the audience. Mali of course answered every single question Jenni asked each kid whether directed at the audience or not. Bu when it was Mali's turn to step up to the easel, and another girl answered for her, Mali turned around, assumed the regal, snappy pose of a drag queen, and declared, "Excuse me, it's MY turn right now."
Which was not terribly polite! But she neither insulted the girl, nor did she tackle her or in any other way cause her physical harm -- actions which would have justified the reactions of all the perfect little parents of the perfect little children -- as a group, they gasped so loudly that I was surprised any oxygen was left in the room. Different universe; I guess my context for bad behavior is a bit different than theirs must be.
I had Mali quietly apologize to the girl for being cross, but those parents? I met every single one of their eyes with a calm, firm detemined half-smile. And if I had deigned to talk with them, I would have told them that the best way to deal with kids like Mali is to ignore the behavior you don't like, and reinforce the behavior you do, and that their group gasp of horror was near-narcotic for our little attention seeker -- not helpful, uptight people.
But she got to meet Jenni, as did we, which was worth the public stink eye. Jenni rocks.
What else? Mali wants more friends with geography names. Pregnant ladies, do you hear me? She wants you to name your babies Australia, New Zealand, or Pakistan.
Winding down ... um, I wrote another essay for BlogHer today, about how Iz likes crappy pop music and it pains me, and I'm not sure what to do but perhaps you could recommend a band or two?
Three weeks of kids on spring break or out sick ended when I plopped Leo's little bottom on the bus this morning. I am exhausted. So, of course, back to work!
Here's our latest Can I Sit With You? announcement. Please take heed, because -- come on -- you know you have a good story and want to see it online and in print (um, and help the kids):
We've been so distracted by publishing twobooks and flitting among the associated events that it took us a few beats to realize: it's been over a year since we asked people to send us Can I Sit With You? stories.
We know you have a wonderful tale or two from your school years, because so many of you have popped up at our readings -- or emailed us -- and told us so.
So, damn it, tell us about your memorable social experiences in elementary and middle school. We want to share all kinds of stories: good or bad, triumphant or wrenching.
We always love to feature tales from former outcasts and underdogs, but would also like to hear more from those of you whose social seas were complicated by undercurrents like special needs and learning disorders, eating disorders, and gender or sexual identity. And then there's the funny. We also appreciate the funny, and the wry.
If your story is a good one but you're worried about making it shiny and slick, no worries. We are skilled editors, and will spit-polish as needed.
Don't make us rap your knuckles with a ruler, pass you a nasty note, throw spit balls at you, or make fun of you on Facebook. Send us your story, and send it now.
Hey, there, MotherTalkers! Welcome to one of today's stops on the blog book tour for Mary Guterson's We Are All Fine Here.
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I love a writer who’s got snark on tap. Mary Guterson, therefore, is an object of my unrequited affection. Her book We Are All Fine Here reined me in with its short sharp one-paragraph summary of all parenting books everywhere. I was further seduced by main character Julia's sly running commentary on all the not-exactly-winners in her life. But then the snarkery came interspersed with insights so apt and true they had me yelling at the book in public. This was not a dull read.
The gist of the book is as such: Julia lives an undistinguished life in the undistinguished suburbs. Her day-to-day doings have become almost tangential to those of her teenaged son and husband. Her job is dull despite convivial coworkers. The only part of her life that hasn't dwindled to habitual passivity is sporadic contact--sometimes full-body--with Ray, the charming but flaky college boyfriend she can't bring herself to cut completely out of her life. When her latest Ray encounter is followed by an unplanned pregnancy, and she doesn't know if the baby is his or her husband's, Julia realizes she is going to have to make some sort of life-changing decision. Though she may not make it right this minute.
No doubt this sounds like a delicious read to many of you. But to me, it sounds like Purgatory. I live the dull suburban parenting grind, and, while I am not unhappy, I also have no patience with novels about trying periods in an unremarkable middle-class suburban woman's life. Reading is my escape pod, and if it doesn't transport me to an alien realm--be it outer space, alternative Renaissance Europe, or post-Revolution Iran--then I'm usually not interested.
Good thing, then, that We Are All Fine Here supports one of my stock book discussion mini-rants: subject doesn't matter if the writing is good. And Ms. Guterson is a talented writer, with a knack for the sort of clear, fluid prose and dialogue that makes the page between reader and story almost transparent. She had me snickering and sniffling despite my skepticism. (She also snuck in enough Star Trek references to prevent a boycott by my inner geek.)
Still, I do have a complaint about We Are All Fine Here, and--lest Ms. Guterson feel unfairly maligned--it is the same complaint I make about many modern American novels: Ms. Guterson's characters seem to have been drained dry. There is little joy or vivacity in this book, and those, to me, are major flaws. Sarcasm, tragedy, and epiphanies are not enough to carry a novel--I require broader representation from the more lively side of the experiential spectrum. I am not saying novelists should be force-fed Sullivan's Travels, but rather that my life is often boring and sometimes depressing and I do not want to read about other bored, depressed people! I get that at home, for free!
I suspected that the author's real voice was more alive. I could occasionally see it poking through the prose, in passages such as, "Here I've let Ray into my vagina without so much as a backward glance, and yet I'm in a sweat over letting him into my living room." My suspicion was confirmed by visiting Ms. Guterson's delightfully neurotic blog. This disconnect between her writing styles makes me wonder if she or an overzealous editor tamped down that considerable, gleeful, nervous energy, to fashion a book that fits neatly on the shelf beside such big hit dirge-a-thons as I Know This Much Is True or The Hours.
(Admittedly, I am biased. When I read about day-to-day living, I do so via the wonderfully unrestrained and immediate world of blogs. The sites I visit regularly are select, because I only make time for people who write like Janis Joplin sang: passionately, and damn well.)
Complaints aside, I have nothing but praise for the last section of the book. (And if you avoid spoilers then please jump to the last paragraph.) After weeks of indecision and paralysis, and just as Julia starts to become excited about her second turn at motherhood, she loses her baby. She loses her baby. Her world is shocked into a different orbit, and, as anyone who has ever lost a pregnancy knows, it never really goes back.
This section was written so well and so truthfully that I wanted to reach out and give Julia the support I would have given a real-life friend. When she remarked, "Afterwards, the world is suddenly full of pregnant women," I wrote in the margins, "Yes, Sweetie, it is." I am grateful to Ms. Guterson for writing about this painful and far from uncommon experience with such bravery and grace.
We Are All Fine Here is top-shelf writing by a gifted author. Reader, if you are not as grumpy as me, you will enjoy it immensely.
