We Go With Him

In Which Charlie's iPad Takes on Water

There are many things that make Charlie not your typical almost-14-year-old American male. One of these is his decided preference for things that are his own, however beat-up, broken, worn down, non-working they may be.

The green shirt (which I've been calling 'string cheese' as that's all about that remains of it) and the brown pants are a good example. Charlie has stacks of soft t-shirts and comfy-loose pants, some new and barely worn, but given a choice, he'd most likely request the raggedy shirt and pants (which appear to be much more indestructible---not a thread hanging loose). As I've written, getting him to wear 'something else' besides the green shirt/brown pants combo has been the project of the past few months as his response to changing has been one of vehement opposition.

Over these days of Spring Break, Charlie has been very easy-going about wearing other clothes for some part of the day, and changing back into the green/brown 'uniform.' For the past few months, he had been adamant that he would only wear the green and the brown when at home, for the whole weekend and after school and I had to sneak them away at night to wash them. But lately he has been handing me the clothes with a 'give , Mom' and a smile, or piling them neatly in the laundry basket.

If Charlie did care about such things as the latest in sneaker fashion or denims, he would not be the one standing all day in line to get the hot new Air Jordans.

So when, on a rainy Saturday afternoon, Charlie was presented with a not new but shiny iPad full-loaded with his favorite albums and lots of photos, and with his smudged and malfunctioning iPad, he made it very clear that he wanted nothing to do with the shiny one and brought the kitchen garbage can to my desk so we could throw 'the other iPad' away.

The shiny 'other' iPad is actually mine. Friday night, Charlie's got a good soaking in our bathroom. He had major thymic trouble that had caused him in the morning to jump, howl, knock his head on us and the furniture, and seem desperate for deep pressure. These are, we have (finally) learned, signs of severe stomachache as a result of constipation so when, after getting through the morning storm, biking over 20 miles, and demanding one food item after the next, Jim and I heard Charlie in our (one and only) upstairs bathroom, we felt a collective family sigh of relief. 

Charlie has become insistent on showering on his own, with minimal parental reminders about soap, shampoo, and scrubbing. He often likes to take long showers (he remains a boy who dearly loves the water) and likes his privacy. We did hear the water running for quite a longer time than usual while various Disney and Kinks songs played. 

When I went up the stairs because it had really been awhile, I found the bathtub nearly filled and 'various' that one doesn't expect to find in the tub therein. I also discovered, neatly placed on the dripping wet counter, a dripping wet iPad.

I immediately took apart the case, which was wet all through. With Charlie looking on nervously, I snatched up a towel and starting drying things up, while keeping it 'peaceful-easy' so Charlie wouldn't be alarmed. He must have been feeling much better about his stomach and got himself dressed and asked for a walk. Jim went with him and I started bailing out the bathtub.

Charlie and Jim returned and the first thing Charlie asked for was his iPad. Ase all soon realized, something was very wrong, as songs stopped and started in mid-syllable, apps opened and closed without a single finger swipe, and Charlie's beloved photos froze the screen. He would not relinquish the iPad so plopping it in the recommended rice-immersion was going to have to wait.

By that point, there were only a few inches of water in the tub but it was clearly not draining. We have been through quite a few plumbers' visits, most involving the toilet and something that Charlie had put into it (like the dupo Lego piece that made it as far as a pipe in the basement by the washing machine until it created severe plumbing havoc). We have a few plumbing tools which work to varying degrees (as I said, we have one bathroom in our house and plumbers' bills add up fast). We've also learned that excessive franticness about non-working household appliances is a sure way to get Charlie extremely excited and then anxious, and then really upset. We we have learned to lowkey such things (and to wish we had bought a house with at least a half-more bathroom; hindsight always hurts).

Charlie was tired after everything and went to sleep, iPad beside him. Jim and I set down the bucket and the rubber gloves and both sat down at our computers, Jim to read the news and me with one intent: Turning my iPad into a replica of Charlie's.

This should have been easy except the computer that I've been using to sync to Charlie's iPad is in a rather less-than-well-functioning-state and may indeed be finally beyond what the Genius Bar can do. I had stored a lot of photos and music on am external hard drive and started going through all that and then going online to download some of Charlie's much-beloved music. I also dug out the CDs---the Kinks Kronicles, the five-different-colored albums of Disney's Greatest Hits---that are Charlie's top favorites of late and started copying them onto Jim's computer (mine has no DVD/CD drive and, alas, I had not yet copied my files of those albums onto my hard drive). I found album art and added it to the Kinks and Disney files in iTunes. The album covers have proved all-important for Charlie, who has been fascinated that he can just tap an icon (of an album cover) on his iPad to pull up whatever music he wants.

Charlie and Jim were sound asleep when I finished downloading and installing everything onto my iPad, made a few more attempts to deplug the bathtub drain (no luck), and blogged about the New York Times Magazine's article on Andrew Wakefield (yes, that is one way I deal with stress).

Rain was predicted for all of Saturday. Jim and  I woke up to hear (happily) Charlie's iPad playing. After some back and forth about who would call the plumber, we made a few more attempts at the tub drain and then I heard a low gurgle somewhere deep down: Success!

Well, partial success. In the course of the going in and out and soothing Charlie's anxieties about having to wait one more day to go back to school on Monday---he has already backed his lunchboxes and set them in the refrigerator---the iPad (which he was watching really closely lest devious Mom try to sneak the other iPad his way) took on some water again. I tried taking off its case and putting it on the other one but Charlie made it clear I had better take that case off immediately and stick it back on his iPad. (He used lots of the word 'give,' which is a sort of fallback verb for Charlie with meanings of 'take it,' 'do this,' 'get it away from me,' and, yes, 'give.') I turned on the other iPad and showed Charlie the photos and music on it and still got a forceful 'no' coupled with 'bye, Mom.'

This boy accepts no replacements. None. At. All.

For the rest of the day, there definitely seemed to be a 'ghost in the machine,' as photos on Charlie's iPad turned on without a touch; certain songs kept repeating over, over and over; the screen froze so often Charlie kept asking me for help (I had to turn the iPad off and on several times).

After first thinking we should bring the iPad into the Genius Bar at the Apple store forthwith, Jim and I have concluded, it might be best to wait. The iPad does sort of work and Charlie has been showing the patience and focus he can have it getting it do so. There was one point around 4pm when, after tapping and swiping away with no results, Charlie burst into tears, but that was the extent of how he showed how upset he was.

So I have now been spending too much time looking at waterproof cases for the iPad. I've found one that looks promising but it's not due out till the summer. Some of the other waterproof cases look pretty much like mega-Ziplocs and I have a feeling that Charlie will yank them off with a definite 'give' but it would be good to have one should he (as he sometimes does now) want to take the iPad on one of our walks, and rain is likely.

As Jim and Charlie went out for bike ride #3 just as the sun (which had made a faint and welcome appearance in the later afternoon) was starting to go down, Jim reminded me of how balky Charlie is about riding a new bike, even if the new one is the same color and model as his old one. 'He adapts,' Jim said. 

I've concluded, the best thing to do is to get another Otterbox case for the other iPad and just keep it at the ready for when Charlie's conks out. He's gotten so much enjoyment from the iPad, of course he's distressed at the thought of having to give it up.

Good thing, too, that I've got a thirty-pound bag of rice in our kitchen.

Motherly Love, ca. the 5th century BCE and the 21st century CE

The internet in my hotel room here in Athens suddenly stopped working this evening, right as I was updating my phone and starting to write this. So I had a frozen phone and a non-online computer which is should not be the stuff of crisis, except that, being across the better part of a continent and an ocean from my boy, being connected is a sine qua non.

The man at the front desk was incredibly helpful (and patient) and I was soon back online (took a bit longer to get my phone working again). The little flutter of 'oh no' did remind me that one reason it's been possible for me to go these past three years to Greece is, in a word, technology. 

When I first went in 2009, I used email when there was internet. Not all the hotels we stayed at had this and I'm not one for internet cafés. Plus I prefered to stay in the hotel and keep track of my students. I called Jim, too, though calling isn't that convenient for spur-of-the-moment questions and occasional worries---and these, I realized, were really the reason Jim and I needed to be in touch. 

In 2010, more hotels (but not all) had some sort of internet access. Plus, Jim and I had found texting a most convenient and efficient way to communicate. When Jim asked me how to deal with a moment of Charlie being 'out of sorts' with his stomach and I was able to respond quick as can be while standing amid a display of neolithic artifacts at the archaeological museum of Thessaloniki, I said to myself, texting is the way to go.

This year, text text text; some email, a good dose of Google chat if Jim and I find each other online at the same time. It's been quite effective so I gave myself a bye for worrying when I found myself laptop- and phone-less. Indeed, I reminded myself, I never would even have thought of attempting these trips without my 'devices.'

The stele above in the archaeological museum of Dion (near Mt. Olympus, in the northern part of Greece) depicts a mother holding a little boy. A stele being a stone grave marker, it's likely it was made for the grave of a child who died. I was very struck by the sorrow and tenderness in the mother's figure as she embraced her son. The little boy is shown feeding his pet rooster a bit of food for the last time ever: Between the way the mother is shown to hold him, and the inclusion of the rooster, I got a sense of how much the boy's parents were missing him when they had this stele made, and how much they loved him. Perhaps they had the rooster carved into the stele, so the little boy would have it with him, wherever he might be.

It is something that such feelings are communicated via a carved piece of stone to us today.

Truly, some things never, ever change.

Hacking the System

I spent Wednesday obsessing over the Wikileaks/Julian Assange imbroglio (if that's the right word for it), Walter Benjamin's ideas about translation and film (I'm late to submit a revised version of the paper I gave about 'critical autism studies' at the University of Ottawa), and Charlie's latest thymic state.

While we are, thanks to some experiences, politely wary of biomedical theories about autism, we have been more and more concluding that stomach distress is at least a little connected to Charlie's difficult moments. His being so much more picky about his food choices has definitely, ah, impacted his system, as has his not drinking enough fluids. We certainly encourage him to eat different foods and to drink more and have had some partial success. But I guess there could always be more in this area.

Wednesday was mostly good for Charlie at school. His teacher noted an interesting, if I may call it that, correlation of events around 10.30am. He had been doing school work and requested a snack and told he could get it, at which point there went his head on the table and a half-hour of intenser than usual unhappiness/ruckus/you get the picture ensued. Once he calmed down (which did take some doing), he was ok for the rest of the schoolday, on the bus, at home (with some intense running back and forth from kitchen to stairs, yowls, and a request to go for a bike ride, happily acceded to by Jim).

I again felt so very much reminded that when Charlie is feeling that he is having stomach trouble, he often asks to eat, or eats a great deal. And that, sometimes, getting the asked for food precedes him getting really upset.

Because it's then he realizes his stomach does not feel so good?

Because he knows his stomach does not feel good and he thinks he has to eat what he asked for and he can't as he feels sick and he gets worried at all this cognitive dissonance-ness and, boom?

Translating the actions of our boy into words and into something we might start to get our minds around: So not easy to hack into our lovely boy's system, to decrypt its operations and read the signs rightly.

(Please excuse the metaphor.)

When the iPad Flies (and I mean that literally)

The iPad certainly seems to have become The Hot Thing to have if there's someone on the autism spectrum in your household and, too, if you're a parent in general. Thanks to everyone for your stories and thoughts (and thanks of course to Shannon for her BlogHer article on her son Leo and the iPad).

There are some aspects of being the parent of an autistic child that make having an iPad a bit more, how to put it, pressing? poignant? something like essential?

The ease with which I can find photos and music and (we have a 3G iPad) download anything anywhere so Charlie can almost immediately have these, is a very great thing. So is the brightness and clarity of the screen, not to mention the size of the device---it's just right for Charlie to hold in his lap, keeping in mind that he's gotten so tall for his 13 1/2 years that he was, quoting Jim, 'the tallest person' in the convenience store when we stopped there prior to a bike outing yesterday morning. Charlie has an iPod Touch but its size has limited his using it---he can type even on the smaller screen but, of course, it's not easy to see things on a device of that size.

When Charlie was younger, I spent a couple hundred on a touchscreen that was jerryrigged with clips onto a laptop. It only worked intermittently, was always on the verge of falling off, and bothered Charlie because he knew it was an 'add-on.' The iPad's touchscreen works just as well as one might wish for, though Charlie is still learning just how much pressure to apply to slide the 'power on' and to get apps and files and photos to open (he tends to touch it too lightly). And, it's super-easy to record short phrases for Charlie to activate with a tap of the screen.

I have to say, had Charlie been younger, I would have thought the iPad something of a dream machine. No more carting around piles of flashcards, cutting out magazine and catalogue photos for the flashcards, getting gluestick all over myself, fighting with the laminator, running up an Office Max bill from buying so many color cartridges for the printer, watching Charlie rip the photos off the flashcards.

Which leads me to one reason why I was hesitant about an iPad for Charlie.

The damage issue.

(Something broken that can only be fixed so much.)

Another parent brought up this point in a comment a few days ago. Kent Adams suggested a durable OtterBox case (I've ordered one). We've been through quite a few experiences of catapulted electronic devices with, as a result, seeing those little X's appear in the eyes of the start-up icon on the silvery blue iPod mini Charlie had years ago, and a visit to the Genius Bar during which the Genius informed me that my laptop was broken in the place that's 'most expensive to fix'. (Throwing, one learns, is not covered under AppleCare.) There is also the potential for other sorts of things occurringthat might make an iPad or other device not work, such as immersion in parts of one's household where there's water (lost at least two iPods that way and had a plumber bill to boot when the silicon case floated down the pipe). And of course there was the time Charlie threw away his iPod in the garbage.

These unfortunate fates have befallen various of the electronic devices in our household in part because, time and again, videos, music, photos, all have the potential to be over-stimulating to Charlie's sensory system and therefore get thrown, I suppose out of a need to get that over-stimulating item out of the way ASAP. Sometimes throwing has been preceding or followed by head-banging---because Charlie's head was not feeling too good from the over-stimulation, or because he felt bad for throwing the device and was, sigh, taking it out on himself). Then, one has numerous problems to address, of which the thrown device quickly becomes the least (if increasingly money-gobbling-up) important. 

Being parents of children with disabilities who need a device to communicate and to give them something to do as they have so few activities, and who may just have a terribly hard, hard time without being able to hear that music or see those videos and photos or play that game---due to these circumstances, it's not unheard of for one to find oneself foing back to the store the very next day (if not the same day) the iPod, etc., was rendered unusable and to get another, new device, courtesy of your weary credit card. Some may deem such a parent to be 'spoiling' her or his child by getting another device after she or he has just, um, broken one, but a parent knows why she or he is doing what she or he is and of course one is trying to teach one's child cause and effect (throw the device = break the device = no device).

It's just that, in Charlie's case at least, it takes some times (quite some time) to work out such relationships.

So yes, the throwing issue (and the putting-the-iPod-in-the-water-issue) were reasons that we were in no rush to get one for Charlie. We more than appreciated the kindness of my aunts and my parents to get one for Charlie, you can be sure! Of course, we keep a careful eye on Charlie when he has the iPad. So far, he's shown no signs of anything untowards and I do think past experiences chucking stuff in the air and seeing the result has taught Charlie you toss it, it's broken, that's it. Charlie is taking to the iPad but slowly, in the methodical way he does when dealing with anything new: Charlie was a late walker, in part because, I often think, he needed extra time to accommodate himself to the major change that walking and being vertical would be to the crab-scoot-thing he'd started doing when he was just turning 12 months old. Charlie never likes to be rushed.

Needless to say, everyone from his daycare teachers to the pediatrician to us who worried about him not walking when he was a (non-toddling) toddler can only now say, well, he certainly gets around fine now.

To the tune of 37 miles over three bike rides, two on the home route and one 19-miler on a different stretch of the horse country bike trail---just lovely times we had on Saturday. An after-dinner walk (with me) put Charlie at just over 40 miles for the day.

Too, bikes---Charlie's and Jim's mountain bikes---are very durable entities and can survive mud, rain, dirt, dust, throwing, and the hard pedaling of one 13 1/2 year old very well.

History in the Biking

We got gas and went to the bank before getting an early lunch Thursday morning, and then Charlie---off from school for Rosh Hashanah (he'd indicated his awareness of this Wednesday night when he stayed up extra late; he wasn't perturbed when I wrote 'home for a holiday today' on his iPad using DoodleBuddy; I think Charlie is already associating his iPad with schedules and such and he looked very intently at the purply words I wrote and speedily, digitally, erased)---Charlie paced and hung out in our front yard until, bikes loaded on the rack, we drove to the train station to get Jim, who, on the ride out to their favorite bike path in Jersey horse country, regaled us not with tales of fashionistas on the prowl (Jim teaches near Lincoln Center, which is where Fashion Week is taking place as I type this and you read it) but with why Walker Percy's family brought Chinese post-the-Transcontinental-Railroad workers and then Italians to Mississippi.

On the bike trail, the wind came and went and you could sense that autumn-coming-and-then-winter chill already in the air---lovely bike riding conditions, and Jim and Charlie did 24 miles.

I have a feeling they'll be breaking that and, before too long, that will seem like ye average bike ride rather than the historical event 23 miles so recently did.

This post is much shorter than average for me as I've got to put the finishing touches on an essay I'm calling 'Autism and the Task of the Translator' for the upcoming Critical Autism Studies Workshop in Ottawa. 

I will note that all these long and longer bike rides have been translating into one peaceful easy-feeling boy.

Working the Transition: Prepping Back to School with Bikes & iPad

Charlie will be back in school next Tuesday and Thursday he and I started working the transition in full force.

I made a Back to School social story using Stories2Learn on Charlie's iPad---my very nice aunts read this SFWeekly article about how the iPad has helped my friend Shannon's son Leo so much and decided that Charlie must have one. So thanks to my aunts and also my parents, I hied me over to the Apple store last week  and exited all iPad'd up.

My first goal was to make a social story about going back to school for Charlie and I did so yesterday morning. Jim had gone to teach and Charlie was up at his usual time. He smiled and said 'no' to a walk and then paced as I had several 'duh' moments putting together the social story on the iPad. You can upload photos, text, and sounds on Stories2Learn and as I was recording myself saying 'I am going back to school,' Charlie said 'no, no school, no'---not a surprising thing to hear Charlie say.

However much he likes school (or anything or anyone, indeed), returning to that place or seeing that person again after a (fairly long) absence makes him anxious. I think Charlie says 'no' as that's his initial, emotional response ('no, I'm just not ready yet'). Given some time to think things through, and just given some time, Charlie is ok encountering said place or person, and it's important (as I've learned through often painful experience) that his expressing of his worry needs to be acknowledged and validated. So rather than us responding 'oh no, you like school' (I mean, how do I know, really, I'm just a mom), I do my nod and uh-hum and mmmmm.

I also kept yesterday iPading and showed Charlie the result. It usually takes him a bit to warm to new things (certainly to new devices) and I could tell he was thinking 'oh no, now what is she trying on me.' He definitely followed the 'Back to School' story, and the combination of visuals and sound, and the ease of tapping (once I showed Charlie where to tap) seems to appeal to him. (Whereas, when we show Charlie a piece of paper with more than 4 or 5 items on it, I'm never quite sure how much he absorbs.)

I've installed some simple spelling and reading programs on the iPad, too, and have been enjoying procrastinating prepping the territorial expansion of the Roman Republic by app-browsing on Moms With Apps and Apps for Autism and Swiss Miss's iPad selections. (I'm sure, though, that you would be able to resist trying out demos for doodling apps and  in favor of reading up on the Lex Canuleia.)  I've been  weighing the  pros and cons of various apps that turn the iPad into an augmentative communication device. ProLoquo2Go is a bit pricey (especially for something that Charlie might only sporadically use). There's also Minspeak and iCommunicate and TapToTalk.  

And yes, we will 'let' Charlie use the iPad for fun too.

After talking about going back to school, Charlie and I drove up to his school and all around it. He looked the building over very solemnly. He had an early lunch (well, we hadn't really bothered with breakfast---we are still on lazy summer mode) and  went up to his room and proceeded to nap till Jim came home.

This transition stuff, it can take a lot out of a boy.

Too, Charlie may have just wanted to rest up prior to another serious bike ride (and in 94 degree heat). Jim rested, we got the bikes loaded, and out we went to the Jersey horse country trail that Jim thinks is their favorite. They went 15 miles with Charlie choosing the path: He led them first (gunning, I mean pedaling furiously, his bike) to a convenience store for a cold drink, then to a road by the river, and then to a part of the trail that is nice and shady. 

Summer isn't quite over yet and I have to say (and very oddly for me, who usually am counting the days till Charlie's school starts so we can all return to the usual school structure; plus I do not like the heat) I kind of wish this one won't end.

Huge huge thanks PLUS to Aunt Anna, Aunt Mal, and GongGong and PoPo!      

A Bit of Poetry

 I've been doing some blog upkeep/redesign and letting my inner geek indulge itself. I changed the banner photo from this to this and have been mucking around with the content in the right column (and even thrown in a photo of myself, since, as has been commented upon, the photos I regularly post rarely include me as I'm the family photographer). Don't be surprised if you come to this site and find things looking even more changed as I've not been able to resist trying out new templates and layouts and arrangements of columns and fonts and all that. 

I have a fair bit of inner geek to express. A significant percentage of my family members are either engineers or do 'something that involves computers i.e. they work in Silicon Valley.' As a Classics professor and avowed upholder of the humanities, I guess I could qualify as a black sheep except that, as you may have gathered, I like fiddling around with html code and computers and one could say it was a curious twist of fate that led me to become someone who knows the Latin and Greek root words of 'computer' and 'program' and 'digital' and all that---of 'silicon' too. At some point I'll get to a format that I'm pleased with (probably something very close to what you see already) and have to find other things to do, to distract myself from translating Virgil's Eclogues.

The Eclogues are pastoral poems. Their setting is the (ancient Italian and Greek) countryside; their characters are shepherds, goatherds, and neatherds (they take care of the cows, if you were wondering); their topics are generally love, poetry, and praise of the glories of the countryside versus the hectic, busy, potentially immoral life of the city. Sometimes a shepherd etc. has to go into the city; he longs, then, to return back home to the simpler good life in the countryside. Indeed, the first Eclogue is about two shepherds who meet on the road; one has to leave because a soldier has been apportioned his land, while the other is happily settled on his farm, as assured by no one less than the Emperor.

That's probably a bit more than you wanted to know about the Eclogues and on an autism blog, no less. I just went into a little detail because of the motif of going and coming, coming and going, in the first Eclogue. This blog is, after all, entitled 'We Go With Him' (it was 'Autismland' in an earlier incarnation, and, before that, 'My Son Has Autism'). And much as I liked the old banner photo of Charlie on his boogie board, I sometimes looked at it and thought, if it is 'we go with him,' then we're all following Charlie out into the ocean. Too, it seemed time to update with a more recent photo of Charlie as he's grown tremendously in the past year.

So, the new photo. The original photo was on this post, 'Solo,' and at the risk of sounding a bit grandiose, I consider it a shot of 'pure poetry.' I like that Charlie is running towards us, after a triumphant boogie-boarding and swim session in his beloved ocean, and at his favorite beach. He handles the board (still strapped around his left wrist) and he's running a bit à la Baywatch or like any ole surfer dude. When I think of how long it took to get him to being able to handle his own board, not to mention catching a wave with it in the ocean---and, going much further back, to learn how to walk (Charlie was 16 months old before he was able to do so)---not to mention the myriad of challenges that Charlie faces every day, and not the long long list of limitations he lives with---the photo captures something about Charlie that gets so very overlooked and forgotten as he forges ahead day by day.

Thursday began at 5.30am. Charlie woke up and showered, and he and I went walking (with me reflecting how much easier it is to get out of bed at 5.30am when it's not dark and cold). He had a fourth great day at school in a row, and then a bout of distress in the car driving home that involved a soda out the window and me pulling over and us taking a short walk down a row of houses and then a quiet trip home. Quiet, because I turned off the radio (it was the R and B hour on the jazz station and I was kind of feeling that they were playing Howling Wolf one too many times) and because Charlie was completely quiet, as if reflecting in a rather shocked way about what had just happened. 

He wanted a walk as soon as we got home which I thought a good idea; Charlie has been usually been requesting the computer once home, these past few weeks. Jim met us mid-walk and he and Charlie then went on a bike-ride. Sometime during dinner and computer and music-listening time, Charlie became much more relaxed and smiling, as if whatever had led to the in-car distress had at last worked his way out of his system. One more jaunt around the neighborhood with Jim and Charlie was very glad to go to bed, after another day of comings and goings together.

Now back to a little more blog design tweaking. And Eclogue 7.

Some Thoughts About Autism Research

The significance of Charlie standing by our front door, raring to go on an evening walk yesterday with Jim (it was raining; Charlie pulled on his hooded sweatshirt and handed Jim his) will be revealed towards the end of this post.

First.

A new study published in yesterday's Nature by researchers from the Autism Genome Project is the 'largest study [on the genetics of autism] to date.' 996 individuals on the autism spectrum of European ancestry were compared to 1287 individuals who do not have autism. While previous studies have looked at genetic variants, this study focused on 'rare, genic copy number variants' (CNVs) which affect only about 1% of the population. From The Great Beyond blog at Nature.com:

[Researchers] found that autistic people did not have more rare copy-number variants than those without the disorder, but their variants were more often found within genes rather than in the vast amount of DNA located between genes. Specifically, 20% more genes contained a rare copy-number variant in autistic participants in the study. And among genes previously linked to autism spectrum disorder or intellectual disability, 70% more of them contained a rare copy number variant. [my emphases]

As noted in a Time magazine article on the study, CNVs 'may include either missing copies or additional copies of genes; most genes have exactly two copies, one inherited from the mother and the other from the father.' The CNVs resulted from 'numerous de novo and inherited events'---that is, they sometimes occur spontaneously in children, and are sometimes inherited from their parents.  Further, from studying the genes showing the CNVs, researchers found four new genes (SHANK2, SYNGAP1, DLGAP2 and the X-linked DDX53–PTCHD1) that may be associated with autism.

The Great Beyond blog at Nature.com, the Time magazine article, an article about the study on US News & World Report, a press release from Autism Speaks, all also note potential actual applications of these findings, to develop 'novel treatments' by offering

shared targets for new drugs, so that even people whose autism has slightly different genetic or environmental causes may benefit from the same therapies. If the biology of the disorder converges on similar pathways in the body, a single treatment or therapy targeted at these pathways could hopefully treat a good proportion of cases. [Time magazine]

Geraldine Dawson, chief science officer for Autism Speaks and a psychiatrist at University North Carolina Chapel Hill, also notes that the findings offer new information about diagnosing autism, perhaps through some kind of genetic testing.

As I've written before, I understand that, at least in the case of our son Charlie, autism is genetic, and I'm very interested in any and all new findings in genetics about autism spectrum disorders. Taking the long view, I'm hopeful that someday genetic research might lead to a better understanding of autism that in turn might lead to the development of medications that might, again in turn, better help Charlie with anxiety and obsessive-compulsiveness, both of which seem to play a large role in his neurological storms, in those 'challenging behaviors' that always seem to get in the way of progress, of learning and of communicating for him.

But in regard to Charlie's immediate future and his most pressing needs, the new study seems---and I am so sorry to sound cynical and, may I dare say, jaded---as full of promise as so many others but mostly of interest in what seems to be increasingly an intellectual sense. That is, it is of interest to see our knowledge of autism genetics being finessed, but there's little, and really not any, direct impact on helping Charlie with what he needs.

Which would be---taking in view the fact that is now 13--- the following: we need to start thinking about transition (from school to what lies after) and about guardianship; about training Charlie to work and take care of his basic daily needs; about finding employers and convincing others to hire persons with disabilities; about finding Charlie a place to live in the community; about providing Charlie with activities in his leisure time; about finding and training and retaining staff; about finding medical professionals (doctors, dentists) for an autistic adult; about financing all this. 

I'm not saying that every scientific study and research paper about autism has to be about these needs, about what are 'best practices' for creating programs and services and training staff. Research is important and necessary, nobody can deny that. But as my son, and all the 200 or so children in his school (a county center for children on the autism spectrum and other developmental disabilities), age out of the school, what's going to happen? 

Should the bulk of the funds raised in the name of 'autism awareness' go to 'research' carried out in a laboratory that may one day lead to the development of some new medication that might help my son, or might make things worse? To creating tests to detect autism in children at younger and younger ages, even before they are born? Should we be devoting the lion's share of research dollars to trying to detect autism in younger and younger children who may or may be autistic? 

What about devoting even more funds than we presently are (or are not)  to create programs and facilities and training and supporting staff? Those teachers, therapists, and aides who spend hours with Charlie and his fellow students, who I see every day, quietly, very seriously, walking the students in from the many buses (like I said, there are some 200 children at the school), sitting with them through happy teaching sessions and tough anxious moments.  The school has a music teacher, an art teacher, a P.E. teacher and they are essential to Charlie's learning; would that there could be more individuals trained to teach music, art, athletics to kids and adults like him, as a child and when he is an adult.

What if every individual on the autism spectrum automatically had respite support by well-trained carers every week, and didn't have to beg request it? Jim and I are perfectly glad (indeed, we relish the occasion) to accompany Charlie on his walks 'round the neighborhood morning noon and night, in sleet and rain and under a boiling sun and in the snow, butwe are only getting older (and creakier in the limbs, etc.). Charlie was so eager to go on a walk Wednesday evening--he'd been pent up in the house all afternoon due to the rain---that he stomped and jumped and ran all over our front lawn waiting for Jim to grab his running shoes and an umbrella (the rain never stopped). Charlie's learned that the walks allay his anxieties, energies, racing thoughts. 

Without stepping into the hot water of discussions about curing and preventing autism, I think we need to ask ourselves, should we devote funds to find out how to prevent autism in yet unborn children, or to help those individuals who are here with us today and who (and whose families) can always use more? 

(Occurs to me that maybe I just got at least one foot rather wet........)

What about research to develop better, improved, even new technological solutions for augmentative communication? To design schools and residences and other buildings using principles of universal design, to create accommodations that make it possible for someone with sensory sensitivities and motor (gross and/or) fine to be as independent as they can? To create computer home monitoring systems so that someone like my son could live in an apartment or house with a roommate(s) and someone (like us and also other carers) could keep track of what's going on, without actually having to be there? 

I know that, ideally, research funding would be dedicated to both science and to more practical applications. But I wonder, what is on the wishlist of needs of the 996 families whose children were part of the study? 

On the top of my list: I want always for there to be someone who can, who will, walk with Charlie.

Time for a Refresher Course

 We thought Friday would begin in an unremarkable way. Charlie had an early dentist appointment at the dentist he's been going to for a couple of years, and quite successfully. We've never been able to do an x-ray but Charlie usually gets through letting the dentist look in his mouth and check his teeth, the tooth-brushing, and even fluoride. Some years ago we did an ABA program which mostly involved teaching him to lie down with his mouth open and hands down. Though one of course doesn't visit the dentist too much (thankfully!), Charlie's visits for the past two years have gone well: The dentist is a compassionate man who really seems to want to see kids like Charlie. Last time, it was just him and Jim who went.

This time, we all went. Maybe from some unconscious worry about being late, I thought the appointment was at 8am when it was at 8.30am, so we had to wait in the waiting room for a half hour, while more than a few children went in and came out. Charlie did fabulous. He didn't want to sit and paced the room, repeating some phrases over and over; we knew these were self-calming measures, "others" waiters in the waiting room were not so thrilled by Charlie's presence His voice carried far and he was most comfortable standing somewhat in the middle of the room, but Jim and I knew, he could have been far less happy, in ways that no one would prefer to witness.)

Charlie went right in, us in his wake, when his name was called. He sat down in the dentist chair and starting opening his mouth. 

The hygienist asked about his medications, and she and the dentist started counting his fingers and then coaxing him to count his teeth, and Charlie twisted his head away, and the dentist was able to see that there could be something like a cavity (Charlie has yet to have one) at the back of Charlie's mouth and he took out one of his metal dental instruments and Charlie started clamming up. Jim stepped in, I tried to model Charlie opening his mouth and he did it but only for a few seconds, Charlie asked to get up-----

After five minutes of this, Jim and Charlie (not agitated, but insistent that it was Time To Get Going---that smile on his face in the photo was his expression throughout) went to the car. I ended up having a ten minute conversation with the dentist about his plans to start having an anesthesiologist in his office so kids like Charlie don't have to go to hospitals to get such dental work done, and parents don't get stuck with huge bills to pay out of pocket, and then the dentist went into how he was going to remodel two rooms by knocking down a wall and how he'd have to get a generator as a back-up source of power and he was hoping to have this done by April by there's NJ state regulations so June is looking more likely----sounds good.

Jim came in looking for me and we both heartily espoused the dentist's plans. He certainly doesn't have to do any of that---he has a steady stream of patients, many kids on the spectrum---I'm really glad he's planning to do so. I rescheduled Charlie's appointment for 8am May 4th (ok, blog friend readers, I put that down to remind myself!); Charlie asked repeatedly for "green Sprite green Sprite"; we dropped off a quite happy Charlie at school.

In the car on the way to Jersey City, Jim noted that he thinks Charlie is fine without the soda, however much he seems to be asking for it---that he's talking about it to "fill the time" to help himself transition from one thing to another. And then we had a long talk about the whole appointment as really a success (barring my memory slip). Obviously there'd been a lot of unexpected-ness for Charlie to handle, plus the atmosphere in the waiting room had been not the friendliest. The dentist and hygienist were, as all the staff at this office have consistently been, welcoming and good-hearted, but (as Jim noted), they should have just skipped all the explanations and gone right to work on Charlie's teeth---he had opened his mouth soon as he got in the chair. Time to write up a Charlie at the Dentist Guide, for ourselves.

I did talk about the dentist appointment throughout the week with Charlie, the same procedure as in the past. But something was different about Charlie this time. He is older, he for sure has more of a sense of himself and his own wants. What he learned from his old (home) ABA therapists has lasted him well for several appointments, but time to try something new. I'm not quite sure what; I do plan to talk to Charlie's teacher about doing a dental program and getting dentist tools and practicing "open mouth" and "hands down" as we once did.

It was a good reminder about we can get stuck in our own rut and need to revisit old things and try new ones.

Which brings me to the iPod Touch.

My parents got Charlie one for Christmas. After him throwing away his iPod nano, and reflecting on the times he had thrown other iPods and various other household items, I've been a little reluctant to get hin started on it. Music seems to be particularly over-stimulating for Charlie these days; he's shown no desire to use headphones (he threw away those, too). I've been waffling about getting some of the augmentative communication apps for the iPod touch like Proloquo2Go, having heard stories of friends' kids liking the iPod touch no problem, and ignoring the special apps.

Emma at The Iron Chicken recently got an iPod touch for her son Dimitri and has been trying Voice4u and Look2Learn. She's got a video of Dimitri using Look2Learn and a great post noting the cons and pros (and really helpful comments with suggestions from parents who've used the software). Look2Learn, Emma notes, has some advantages for a child who has less than perfect fine-motor coordination. Some of these apps only have "I want" as a verb choice; as the one communication Charlie tends to do a lot of is requesting, I'm wondering if the more elaborate (in some ways) (and much more pricey) ProLoquo2Go might be of more use.

I'm more eager to read more about these apps and to consider getting them to try with Charlie. In the meantime, I found myself emboldened to try Charlie with his iPod touch again. On one of our walks (motion gets my thinking going too), I thought of how I can load photos onto it---of things Charlie likes or might request, perhaps, or of places. Also, it occurred to me that I can use the Notes function to type out schedules and lists for Charlie. Not that it's a big burden to carry around a pen and a scrap of paper but the iPod touch offers some more possibilities---I can save the notes, show them to Charlie again.

So last night, between typing on the laptop, and noting how proficient Charlie has gotten at that---he types with much more confidence, speed, accuracy than a few months ago---I took out the iPod touch (securely enclosed in a plastic case). First I opened up a note and asked Charlie to type "Barney." Even though the keyboard is so very small and it's a touch screen, he typed the word perfectly and also a few more words I dictated to him. I also showed Charlie how to press the bottom button and gently touch his finger to "unlock" the screen.. He didn't resist. I'd even say, he was curious.

A little refresher of what you thought you knew, and you realize there's a lot more possibilities than you may well have first thought were there.

Not All Who Wander Are Lost

I've been pulling out this piece of paper upon which Charlie wrote "can't find it" at intervals as we use the laptop. He's chiefly interested in going to YouTube.com or Google search to watch tv shows from his (gulp) early (Charlie will be thirteen in just about four months---oh, my, ........) childhood, or to see photos of toys that he used to have: a game called Farm Families, a VTech laptop, and the original LeapBook from Leapfrog. 

I was relieved when Charlie started getting interested in searching for the toys. With a little finessing with one's search terms, most anything toy-wise, CD-wise, video/DVD-wise, created in the past 12 1/2 plus years can be found on the Internet. (For instance, typing "Farm Families" only gets us one photo of the box of that game, but type in "Farm Families Milton Bradley" and there's a few more photos for Charlie to peruse). Videos of kid tv shows are the dangest thing to find, thanks to copyright restrictions. I mean, of course I know that these are necessary (and I even found myself downloading---a bit ironically?---a copy of a book about piracy and the "intellectual property wars" the other day). But explaining to Charlie why one day there was a video he's watched for the past few months on YouTube and the next it was gone "due to copyright restrictions," pulls at the parental creative juices.

In the past, I would tell Charlie "that one's not available" (a phrase that sounded stiff and "huh?" to me) and then "we can't find it." At some point or other, the latter words hit a quite raw nerve in Charlie, and hearing "can't find it" garnered a response equivalent to another bugaboo phrase, "broken." Hearing that something was lost or irredeemably beyond repair, bothered Charlie to distraction and, sometimes and ultimately, "behavioring." It was only in the past few months that---maybe in hopeful consideration of Charlie getting, as he indeed is, older and more mature---that I decided to address the delicate issues of "can't find it" and "broken" head-on. First I deliberately said those words but just once, in a clear and steady, and matter-of-fact voice, in a (very hopeful, possibly vain) attempt to help Charlie think of these concepts as part of (for lack of a better expression) the natural order of things.

And over the past few weeks, I've had him write "can't find it" and "can't find them" a couple of times and have referred back to the above-photographed sheet. Somehow me doing so, and pointing to the words (mine and Charlie's) as I say them with Charlie repeating, makes the notion of "can't find that video clip anymore" not something to get too overwrought about. 

Charlie might say "broken" over and over (getting more enervated with each utterance), or pronounce "can't find it" in arch tones of distress. I used to try to divert him, very unsuccessfully, from saying those words over and over, thinking that I would "take his mind" off those thoughts. I suspect now that I only made his worries worse: The more I tried to pull, the deeper in he sunk in a quicksand of words mixed with thoughts mixed with strong feelings. 

Again, words on paper (especially words he has written) seem to have a special power for and on Charlie such that, after a few rounds of requests, he stops asking for those unfindable videos.

Except of course, last night---by merely having Charlie type into Google search rather than YouTube and click-roaming here and there---we found the videos, or at least trailers and snippets of them, on IMDB and MySpace. 

At which point, alls one can say is ηυρηκα, right?