Mark Woodman, a software developer in Colorado, has written an intriguing series of articles for Wired, Hacking My Child’s Brain. In it, he recounts his experiences with his son, Caleb, 6-going-on-7, and Caleb’s struggles with Sensory Processing Disorder. The title caught my eye (how could it not?) when it came up in the Wired RSS feed on my cusomized Google page. After reading that initial article, I wasn’t sure where he was going with it, but I knew one thing: I was hooked.
You see, slightly over a year ago we had The Boy evaluated to try and figure out why he was having such a hard time with kindergarten. One of the areas of concern that the psychologist identified were possible sensory integration issues – predictable daily routines are a must; sensory input has to be muted: he can’t stand noises that are too loud, or tastes that are too extreme, or clothing that isn’t soft, or scratchy tags; he doesn’t notice bodily cues like needing to go to the bathroom or feeling hungry or being hurt; he talks incessantly, his words racing to keep up with his ideas; he makes noises and engages in other self-stimulating behaviors; he craves physical contact, and can’t sleep without being wound up in his sheets like a shroud; he doesn’t always respond appropriately to non-verbal cues.
When I read Mark’s description of his child, it was like reading a description of The Boy, only with everything turned up to eleven:
My son’s brain can’t handle all of the sensory input his body is sending him. Caleb has Sensory Processing Disorder, the human equivalent of a computer that can’t adequately multitask, or a network that drops packets when there is a lot of traffic. All of his senses work individually, but his brain loses information when they are combined. This problem wasn’t obvious to us when he was younger, but now that he is in first grade, the complications are growing.
This disorder effects everything Caleb does. New situations or rooms full of people are information-overload. He needs heavy routine and structure just so that he can learn without being overwhelmed by his environment. He can listen to what I’m saying as long as he doesn’t have to look me in the eye. (If I demand eye contact, it takes so much concentration that he literally can’t understand my words.) If he needs to say something, the effort of self-expression shuts out everything else. He doesn’t notice he’s blocking the grocery aisle, or that he’s hopping on one foot, or that he needs to use the bathroom.
Caleb lives in the abstract, because the concrete world just doesn’t mean much to him. He is the epitome of Calvin from Calvin and Hobbes; reality competes with (and often loses to) his vivid imagination.[emphasis mine]
The conventional treatment for somebody like Caleb is occupational therapy, coping strategies, and even special education programs. But that doesn’t satisfy me. I’m a software engineer, and I can’t help but see the human brain as a beautiful combination of software and hardware (or wetware, if you like.) It is hard to imagine Caleb in a special ed program; he’s brilliant and reads years ahead of his peers. His senses work fine individually — just not in concert.
And here’s where our stories diverge…
At the time of The Boy’s evaluation, we decided that we would mostly focus on cognitive skills – training him to recognize bodily signals, reinforcing desired behaviors, helping him develop the coping strategies that Mark eschews. We’ve largely framed this as an attentional issue (Attentional Disorder, Not Otherwise Specified), and mostly left the sensory issues out of it. Occupational therapy was out of the question for The Boy – at the time, he was too old for private insurance to consider it, and the school system wouldn’t provide it unless he had a marked deficit in physical performance, such as handwriting (though both systems would have been happy to provide it if he was more profoundly disabled.).
Here’s the thing about hacking: you need to use the right tools for the right job. The earliest hackers weren’t just into software and hardware; they were also into locks, and what is now called ‘urban exploring’ or ‘urban caving’. They were into puzzles and pranks and logic tricks. They were into exploring the interactions between the meatspace world and the electronic world, creating devices to mimic the tones used by Ma Bell to control telecom switches and building custom circuits. An ‘elegant hack’ could be a solution to almost anything – as long as it was elegant, and, well, hackish. You knew it when you saw it. It’s a process that isn’t necessarily covered by any hard and fast rules; intuition and personal know-how are the order of the day.
As parents, we’re always hacking the brains of our children. Do you read to your kids? Hacking. Do you drink, smoke, or swear in front of them? Hacking. Attachment parenting? Hacking. Breast-feeding? Hacking. Co-sleeping? Hacking. Do you use physical discipline? Hacking. Some hacks are elegant, some are brute force; some are hardware hacks, some are software. It’s all hacking.
But as with the hacking world, not every problem can be solved by the same set of tools. In Mark’s situation, Caleb sounds like he is a lot more impaired than The Boy has ever been. The course of treatment that his family is engaged in is a lot more radical than anything we would ever have considered. But the mindset with which you approach the problem often influences the tools and methods you use.
For us, by framing this as an attentional issue it has been far easier for us to get cooperation from the school system. The sensory issues are presented as being complicating factors, not primary – and it seems like our interventions are working. We’ve had almost a month now without any kind of major classroom disruptions, and I think we’ve got everyone on the same page now. We have a system of classroom interventions that is as consistent as our home interventions as we can get, and we have The Boy in a weekly play group (primarily geared towards Autism Spectrum Disorder kids) to work on some of his social skill deficits. But after reading Mark’s articles, I have to wonder – we chose our path because it was one we were familiar with. I can’t help but wonder how it would have gone if we’d decided to pursue an intervention that addressed the sensory issues more directly or aggressively.
Every installment of Mark and Caleb’s story has produced ‘aha’ moments. The issues that Caleb and The Boy face are very similar, differing mostly in scope and scale. I can’t say (and I’d be wrong to say) that Mark’s approach to Caleb’s care is wrong. I don’t know that; I’m not Caleb’s father, I’m not privy to the intimate details of their life. What I do know is that The Boy flits about in a grey area on the border of ’special needs’, and I think I’ve mostly come to terms with that. I also know that what we’re doing seems to be working. I hope that Mark sees the same kinds of results in Caleb; I know for sure I’m going to keep following their story.
Because parenting is probably the hardest hack I’ve ever worked on.
Posted by protected static as random at 11:47 PM UTC
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I’m tired.
I’m tired of the lies. I’m tired of the arguments in bad faith.
I’m tired of the death and dying. I don’t want to read any more stories about people sifting through body parts with their bare hands in a morgue so that they can bury their loved ones. I don’t want to read any more stories about suicide bombers blowing up soccer fields. I don’t want to read about wounded vets finding promises made to them unmet. I don’t want any more dismembered children, ours or theirs. It’s wearying, wearing.
And I’m tired.
But at this moment, I’m tired of the dishonest labels that constitute “debate”.
Thinking that the war in Iraq is wrong does not make me a coward. It does not make me a pacifist. It does not make me a defeatist. It does not make me a traitor.
I am not a coward if I don’t think we should be fighting in Iraq. Leaving aside the right and wrong of Iraq for the moment, I must ask this: we lived under the shadow of the Soviet Union’s atomic arsenal for half a century – and now, only now, the cudgel used to beat policital opponents is the idea that some day terrorists might detonate a nuke in a major city? Yes, that might happen. But that threat has been there for a long time now. This is not something new, and if it didn’t require us to tear up the Constitution or start illegal wars then, why is that required now?
Asking these questions does not make me a coward.
I am not a pacifist if I think that we should have put our resources into finding and killing bin Laden – you know, the person who actually attacked us on 9/11. Why did we turn our backs on international cooperation and increase the probability that we would inflame anti-American prejudice? Why did we pour all of our energy into attacking a country that was a secular nationalist dictatorship instead of seeking to attack, undermine, and overthrow actual sources of Islamic terror? Why did we withdraw troops from Afghanistan to invade a country that was, while potentially harmful in the future, fully contained and neutralized at the moment? Why have we not done everything we can to minimize our dependence upon Middle Eastern oil?
Asking these questions does not make me a pacifist.
I am not a defeatist if I say that attacking Iraq was wrong. If this indeed is a global struggle between Western culture and radical Islam, then how does attacking Iraq help us achieve “victory”? How have we defined “victory”? Have we really done so yet? Have we really defined our goals, set benchmarks, thought through the consequences of our actions? Because right now, victory means “not leaving Iraq” – so how exactly does that help us against radical Islam? Can we engage in unilateral, preemptive warfare without undermining our stature in the world? Can we fight ideology with massive military force?
Asking these questions does not make me a defeatist.
I am not a traitor if I question the judgement of our political leaders. How exactly did we come to the decision to invade Iraq? Were we lied to, and if so, how much? If our national leadership continues to pursue policies that don’t clearly achieve our purported goal – the defeat of militant, radical Islam – then am I not entitled under the Constitution to raise my voice in protest? To openly question? To ask for investigations and accountability?
Asking these questions does not make me a traitor.
I ask those who would use these labels to put up or shut up. If I’m a coward, show me what a non-coward would do. If I’m a pacifist, show me how a non-pacifist would get things done. “Finish the job” as you see fit. If I’m a defeatist, show me your plan. Your entire plan, no wishing for ponies, no hand-waving, no obfuscation. And if I’m a traitor, demand my arrest. Go ahead. After all, the survival of the Republic demands no less, does it not? And when you do, your true nature will be revealed. You will show yourselves to the world, and we can see once and for all your genocidal lust, your totalitarian fantasies, your Calvinist blueprint for American society. And the rest of America can recoil in horror, and treat you with the contempt you deserve.
Or America can embrace your vision, and become that which she fears most – a radically militarist society, intolerant of dissent and difference, demanding absolute conformity and order, operating within narrow moral guidelines, subject to religious policing. The best aspects of our society will be cast away, crushed because Things Are Different Now, because Order Must Be Preserved. Crush those “morally decadent enclaves” that you claim weaken us so. Those differences that keep us strong, those urban centers that keep us creative, those things that (for good and ill) make America American – no matter, because 9/11 Changed Everything.
Either way, it will be over.
Because right now, I’m tired.
Posted by protected static as politics at 9:30 AM UTC
4 Comments »
When pointing fingers at Iran about their meddling in Iraq, one must remember that such charges can go both ways:
TEHRAN, Feb. 17 (Xinhua) — Explosive devices and arsenals used in a terrorist attack in the southeastern Iranian city of Zahedan on Wednesday came from the United States, the semi-official Fars news agency reported on Saturday.
Relevant documents, photographs and film footage, which show that the explosives and arsenals used in the attack were American, would soon be made public, an “informed source” was quoted as saying.
The source further pointed out that Jundallah, a shadowy Sunni militant group, had several plots for assassinating Sunni and tribal leaders to sow discord and foment conflicts between the Shiite and Sunni citizens in Sistan-Baluchestan province.
On Wednesday morning, an explosive-laden car exploded in Zahedan as a bus, belonging to ground forces of Iran’s Revolutionary Guards Corps, passed by, killing at least 11 people and injuring 31 others.
Not that I find Xinhua to be a disinterested source – after all, the PRC has interests in the Middle East, and growing interests at that. But still… When I first heard about the bus explosion, my first thought was that this could be a deliberate provocation by the US – and even if it wasn’t, it would likely be seen as such by many in the region.
Posted by protected static as politics at 9:50 AM UTC
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Shorter Frank Gaffney, Jr.:
Since it makes my nipples hard to think about jailing and executing Democrats, I need to find a fake quote from Abraham Lincoln that justifies my fantasy *and* furthers my political goals at the same time. Score!
…or…
Since my ass (and like-minded asses like Douglas “Stupidest Fucking Person on Earth” Feith) might be held accountable for leading us into this Iraq mess, I can shut my political enemies up by accusing them of treason *and* fulfill my sexual fantasies at the same time by repeating a fake quote from Abraham Lincoln. Score!
Take your pick. Both cover the essentials of his op-ed piece; decide for yourself which motivates him more, the personal woody or the political one.
[via Glenn Greenwald; real Lincoln quote in title from here]
Posted by protected static as politics at 9:14 AM UTC
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He passed, with a quick “See instructor” note – he had performed one of the ‘one step’ exercises leading with the wrong foot, but that was the only critique.
Posted by protected static as random at 11:33 PM UTC
4 Comments »
I have been harboring a dark secret: for some weeks now, I have been a regular viewer of VH1’s The (White) Rapper Show.
Betcha didn’t see that coming, didja?
Hey, I have an excuse – I have an in-law competing on the show…
Posted by protected static as cultcha at 11:09 PM UTC
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Ignorance more frequently begets confidence than does knowledge: it is those who know little, and not those who know much, who so positively assert that this or that problem will never be solved by science.
Born on the same day as Abe Lincoln – 12 Feb 1809, 198 years ago. More here. Quote and pic from here.
Posted by protected static as 30-second science blogging at 6:28 AM UTC
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So, I got a reply from their customer service. You’re gonna love it:
Thank you for writing to us at Amazon.com.
I do understand your concern to close your account. I am sorry to know that you are receiving fraudulent e-mails. I’ve checked and found that our investigation department is working to find out the resolution.
Before authorizing us to close your account, please read the following information carefully. Further action is required in order to close your account.
I don’t want you to close MY account! I’m not getting email! It’s comment spam! I want you to shut down the comment spammer’s account!
Oy.
Posted by protected static as asshattery, spam at 9:04 PM UTC
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So, The Mystery of the Haunted Vampire has been getting some new trackback and comment spam, all attempting to spamvertise bogus Amazon.com storefronts. These sites are clearly bullshit, and they look like they’re taking advantage of a security hole of some kind in Amazon’s Associates program, probably lax validation when accounts and storefronts are created. I say lax validation because it probably looks like these bastards have a script set up to automatically generate these storefronts. So I fired off an email to Amazon’s customer service telling them about this… and got back this response:
Thank you for writing to us. We received your message wondering if an e-mail you received is really from Amazon.com. Unfortunately, we didn’t receive a copy of the suspicious e-mail, so I cannot determine its origin.
You morons! It isn’t about email at all, and I clearly stated so in my complaint! It’s trackback spam and comment spam, and you’re hosting the stores! Shut the damn sites down!
Yeesh. Thick.
I’ve responded using their “No, this wasn’t helpful” link – we’ll see what comes of it. If I get the same sort of BS, I’ll use their “leave a phone number and we’ll call you” service and see if I can get a better response…
Posted by protected static as asshattery, spam at 12:57 PM UTC
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Well, The Boy did a great job today; he performed well during his tests, and he was able to sit still for over 30 minutes (30 minutes!!) while the other kids tested. I’m exhausted – I was totally tensed up while he was out there, and I’m ready for a nap…
The only big rough spot was when he started to get a little silly during the transition to sparring; all that noise and commotion was just too much for him to keep it entirely under control. Fortunately, the instructors were busy helping the sparring kids armor up – I don’t think they saw him. The only other thing that has me at least somewhat worried is that he was (obviously) not paying attention at the end when the entire group of kids was standing together back out on the mat.
We’ll see – scores will be announced Monday, with belts to be awarded Thursday. Regardless of the eventual outcome this was still an excellent day (30 minutes!! Almost totally still!!), so we’re going out for a little celebratory dinner. And while I don’t think we’ll need it, should he not pass the test, we’re prepared to turn that into a teachable moment…
So – to be continued, eh?
Posted by protected static as random at 5:13 PM UTC
6 Comments »
Meet Jennifer Parcell, USMC. She was 20 years old, and she died in Al Anbar on the 7th. She’s #3115.
Which story is more important?
What does that say about our priorities?
Posted by protected static as politics at 9:39 AM UTC
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Finally, we have a resolution to our ongoing mini-drama (Ch. 1 and 2): The Boy has his behavior tape back, and will be eligible to test for his next belt tomorrow.
We’re a little irked because the instructor dragged it out somewhat longer than we thought appropriate, but hey, she’s the kyobum nim (instructor), and it’s her do jang (studio/school). The whole Confucian-influenced-shame-thang is pretty deeply embedded in the instructional styles of the Asian martial arts that I’m familiar with, and she’s pretty mellow compared to many instructors I’ve seen, so I guess we’ll take what we can get. And, well, The Boy did more or less hold his shit together for three classes, two of which were the Forms classes that have been the most difficult for him to manage; this definitely qualifies as a Good Thing.
We’ll see.
[*]Yeah, ‘purloined’ isn’t fair – he did deserve to lose the tape – but it makes for a snappier title… And since I’m still learning all the Taekwon Do terms (I know many of the Japanese terms, but not the Korean ones), here’s a brief glossary [PDF].
Posted by protected static as random at 9:19 AM UTC
1 Comment »
It’s all about the dead trees here at chez static this morning. First, I want to point some of y’all to a great book I picked up yesterday: Dreaming in Code: Two Dozen Programmers, Three Years, 4,732 Bugs, and One Quest for Transcendent Software. Written by one of the founders of Salon, it chronicles the attempts of a software legend to create something new, all the while trying to answer the question, “Why is making software so hard?”
As a programmer, I’ve certainly experienced ‘dreaming in code’ – being submerged so thoroughly in a project that I’ve literally dreamed about the actual, physical source code, character after character appearing as though being typed into an editor. I also have the pleasure of being involved in a project about which I am passionate, and over which I have a large degree of creative control – an opportunity to make a ‘dream’ tangible, ‘word made flesh’ as it were. It’s quite a high, and like most intoxicants, potentially addictive; I don’t think I could return to the grey, soul-sucking world of business development. As you can probably imagine, I’m not having much difficulty relating to this book.
It’s a pretty easy read, particularly if you’re already conversant in software; I bought it yesterday, and I’m about half-way through it already. An interview with the author, Scott Rosenberg, may be found (on Salon, of course) here; yeah, yeah, yeah; just watch the damn ad. I don’t think it will provide any definitive answers to the ‘why is it hard?’ question, but it will certainly provide a lot of food for thought for programmers, technical managers, and anyone else interested in some of the meta questions surrounding software.
On a semi-related note, I read a review on Wired this morning about China Miéville’s latest book, Un Lun Dun:
[Un Lun Dun] follows a young girl’s quest to save a creepy parallel-universe London. And for Miéville, best known for a steampunk trilogy full of superhot, beetle-headed women and nightmare-eating monsters, it’s a new direction. He’s written something that kids, especially young girls, will devour.
[...]
Un Lun Dun isn’t perfect; it often mistakes wordplay for imagery and feels a little pat. But give it to a kid (and borrow it when they’re done). It just might help them grow up into the kind of nerd we need a lot more of — one who thinks they can save the world with sheer ingenuity.
We haven’t had a whole lot of trouble introducing The Boy to fantasy – but I’ve been hard-pressed to think of appropriate ‘gateway drug’ books for science fiction. As the review linked above mentions, most science fiction that’s out there is a ‘lousy gateway drug’ – most of it is written for those who already have a taste for it. In my own experience, fantasy and horror came first, with science fiction filtering in later. I may have to leaf through this one and see if it’s something that would be appropriate for The Boy.
(For those of you who aren’t familiar with the source of the title, it’s Groucho Marx: “Outside of a dog, a book is man’s best friend; inside of a dog, it’s too dark to read.” But I’m pretty sure most of y’all already knew that ;-))
Posted by protected static as cultcha, geek at 8:51 AM UTC
4 Comments »
Yesterday was a great focus day for The Boy: there was no goofing off during piano lessons, and he was great during Taekwon Do – but he still wasn’t awarded his tape… The instructor wants to see him keep that kind of focus for one more class, so we’re going tomorrow or Tuesday to see if he can earn it back.
It isn’t the loss of the tape per se that worries me – like I said, that was entirely appropriate. What has me somewhat concerned is how The Boy will handle having to sit through another whole series of white-belt lessons until the next scheduled test. Needless to say, I’m keeping my fingers crossed.
Posted by protected static as random at 9:00 AM UTC
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Do you remember back around Thanksgiving, when I wrote about The Boy’s Taekwon Do experiences earning his first ’stripe’ of tape? Well, that was only after maybe two months of lessons. This was followed by our trip, so he skipped a month; after a week or so to settle back in, he really pulled his act together and knocked the remaining 4 tape ’stripes’ off two at a time, bang-bang-done, thus making himself eligible to test for the next belt – next weekend.
Unfortunately, he just couldn’t stay focused at class the other night. He was laughing and goofing off, and so… he (appropriately) lost the tape he’d earned for his behavior. As a result, he basically has two chances to earn that tape back – tomorrow or Tuesday – or he loses the right to test for the next belt.
Dammit.
He seems motivated, but I dunno… We’ll see. The really frustrating thing about this whole episode is that he’s been really on top of things at school. I know that it makes for a good ‘teachable moment’, but it still sucks.
Posted by protected static as random at 9:23 PM UTC
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