We Go With Him

Up Down

ὁδὸς ἄνω κάτω. "The way up the way down." Heraclitus, who is possibly my favorite Ancient Greek philosopher (it is definitely not Plato), is said to have said this and reviewing the words for up (ανά) and down (κατά) in Ancient Greek can lead one to recall those words.

As can other things.

Charlie navigating quite qell the return back to school post-Spring Break and saying good-bye to my parents after a visit -- three fun afternoons of biking (12 miles Tuesday) and long walks each day, plus a rather rollicking, light-hearted Wednesday afternoon while Jim was at meetings and teaching late, accompanied by three tense nights with Wednesday including an extended utterance session of "doctor" and "doctor office" till past 1am. Not quite sure of the meaning; our interpretations have ranged from the obvious to the associative, as ever.

Modem breaking, washing machine breaking and spending one-third of Monday morning at the Department of Motor Vehicles to get a new drivers license after leaving my wallet behind at one of our routine stops, so that I was able to renew it (the license, wallet shall not be resurrected) early rather than in August which is possibly the worst time for me to do so as Charlie is home without school, summer school or camp.

Also, at the moment, we have no water because the street in front of our house is being dug up to fix the pipes, one of those post-Hurricane Sandy things. (Meaning that, it's obviously good the washing machine is broken because I just got back from the laundromat with a load of laundry instead of witnessing the machine sputter as the water went off.)

As Heraclitus also says, φύσις κρύπτεσθαι φιλεῖ, "nature loves to hide [itself]."

 

Vacation Day

I have had the frankly terrible topic of this post about facilitated communication on my mind for the past two weeks and finally wrote something about it Monday afternoon while Charlie was taking an early evening nap.

He and Jim had had a fine ride on the bike trail but, as they came back, I could hear Charlie crying. He dozed off in the car on the way home, woke up for lunch but ate little, and was edgy back in the house until he appeared on the stairs with his swimsuit saying 'Yes.'

It was too late to drive to our usual beach, plus Jim and I are still having 'what to do with a swimmer boy like Charlie' discussions. Then, as Charlie loaded his boogie board and the beach bag into the car, Jim remembered a lake in a state park that we had gone to years ago. It's not even a half-hour from our house down the Garden State Parkway and, with a smiling Charlie, there we went.

No boogie boards are allowed at the lake and Charlie handled leaving his in the car with aplomb. He ran right to the little beach and into the water, wading out with Jim to the rope boundary.

Charlie didn't swim but seemed content to roam about in the water, which was quite warm. I ventured out too and Jim had a nice chat with a mother whose 7-year-old like-Charlie son was doing dives and flips in the water, as Charlie had once done when he was younger (and smaller).

Charlie wanted to go after about 40 minutes and it was an easy trip home. He had dinner and then went up the stairs to sleep around 7pm.

After he woke just before 9pm, I took a red marker and X'd out another day on his calendar. Just one day now, I said.

'No school tomorrow,' said Charlie. Meaning, 'I don't want to go to school.'

Yes, just what we figured he'd say before going back to summer school.

One more day it is.

(Yes, it's going to be another late late night here. But I'm getting rather used to such.)

There's No Such Thing As Nonsense

I've had some research about bilingualism on my mind after reading it over the weekend. I know a couple of languages and, thanks to the ease with which one can find websites in any possible language, I've been able to practice them regularly. When I was in school, speaking in a foreign language was absolutely not my forté (hence I ended up studying Latin and ancient Greek and, for two years, classical Chinese). Now, much less hampered by being overly self-scrutinizing and worrying about making the proverbial fool of myself, I do a lot better trying to stumble my way through speaking in a foreign language.

I've no scientific protocols or data to back this up, but I like to think all the languages I know and have coursing through my head have helped me better understand Charlie. I don't expect the subject of a sentence to be the first word. I can see how an adjective can be used as a verb and I can tell when a verbal idea (like 'wanting', or 'giving') is expressed even when a verb is not used. I'm not bothered by the omission of definite articles (Latin has none). Of course a word, even the straightforward-seeming 'no' can have multiple meanings -- can be polysemic -- based on context. And, just because some verbal utterance is incomprehensible in English, does not mean it could be an actual word or phrase.

The last point in particular may be a reason why I never think of any sound Charlie produces as 'babble' or 'nonsense' or 'just meaningless sound.' If you start from the premise that every utterance is meaningful, and that Charlie, though severely limited in his speech, is bursting with communicative intent, you start to see how much he is communicating, however little he speaks in recognizable words.

Another thing we're always reminding ourselves about is the lag between something happening and Charlie expressing how he feels. At his class's weekly grocery store trip, Charlie tried to throw a Pyrex pie dish -- a similar item was once thrown at home -- and then a plate and he got very upset. I could tell he was troubled when he got off the bus but he gradually cheered and started calling for a bike ride. Jim, once home from his first day of teaching summer school, was glad as ever to pedal off with Charlie, but our boy was first unusually solemn and quiet and then crying. Once home, Charlie got into his ultra-demanding mode, calling for this and that food and to go here and there; we settled for a ride to the pharmacy and then made a swing by McDonalds with Charlie saying 'yes' and then 'no' and then 'no' and then 'yes' and 'no' and back and forth.

We got him two hamburgers and a small French fry and Charlie ate it all. For the rest of the evening, he vacillated between a cheery mood and a troubled one. As it grew later, Charlie went into the kitchen and called me and then wanted me to leave. I went in and out (I can always find some random thing to do in the kitchen) and, at one moment, found Charlie doing the equivalent of pull-ups on the counter, between taking bags of dried fruit and chips out of the a cabinet and lining them up and eating watermelon.

Surmising he might need to get some physical activity, I suggested a walk. Charlie said 'no' and went up to his room , only to tromp down after 11pm and ask for his socks and a walk.

We pointed out that it was late and that, should Charlie rise early enough, we might walk then. Charlie turned around and went to bed and within minutes we could hear him taking the regular breaths he does when he is sleeping.

So many thoughts and yearnings and confusions and contradictory emotions and ideas.

Few words.

Lots of heart.

Post #1293

I started writing the earliest incarnation of this blog, then titled My Son Has Autism, back in June of 2005. Though this blog has changed names (it was Autismland for some time before becoming We Go With Him---Jim, my resident wordsmith, coined both names) and even web addresses (it was originally at http://mysonhasautism.blogspot.com and then at http://kristinachew.com and now at http://autism.typepad.com), and though I took a bit of a hiatus from writing here while writing Autism Vox (http://autismvox.com) and then co-writing the autism blog at Change.org (http://autism.change.org), I think I can say I have written something about Charlie and autism in some online space every day since the 18th of June, 2005.

Whatever this blog's name, it has always been meant to be a space to write about Charlie and Jim's and our lives raising him, a child on the moderate to severe end of the autism spectrum. It's meant to be a chronicle, a journal in the basic sense of the word as a daily account (jour being 'day' in French), and also a public record about the realities of raising an autistic child as frequently difficult and heart- and soul- wrenching, sometimes messy, often a bit wearisome on the bank account and---may as well get real---the body and the psyche, while always meaningful and (even on the worst days) full of joy, beauty, and love.

That sounds like a bit of a manifesto, doesn't it?

While, in the early days of blogging here, I occasionally talked about 'issues in autism' like vaccines, I decided that I preferred to keep the incendiary stuff a bit separate from Charlie's story. Autism Vox and the other blogs I've written have been wonderful places to write about autism from more of a political/advocacy angle. Currently at Care2.com I've been writing both about autism and disability and also about topics quite unrelated to them. To everyone who reads what I write here, or who has read what I've written elsewhere, thank you.

I'm over-the-top honored that  We Go With Him has been included among Babble's top 25 autism blogs of 2011. It means a very lot that this little space where I record the mundane details of our daily lives has gotten such recognition.

Babble's description of We Go With Him notes that my focus is on 'Charlie's activities rather than his autism' and that I present 'him as a growing, active boy who loves to bike, run, and pursue other adventures.' I really see We Go With Him as all about our adventures with Charlie. Sometimes these are the same from day to day (all of those bike rides); sometimes they are unexpectedly hair-raising. Some have taken the three of us to repeated visits to the ER. Quite a few of these adventures happen at the beach--yes, the Jersey shore (which is not only the tawdry land of bars and debauchery presented on that reality TV show)---and, lately, all of them happen in New Jersey as travel has become more unsettling for Charlie as he has gotten older. When he was little, we used always to take him on trains, planes, subways, and ferries. Adolescence was not kind to Charlie, I have to say; it was when he turned 11 that we started to have to give up those adventures that took us beyond New Jersey. 

But I'm a firm believer that adventure is to be had everywhere and anywhere, even on one of the long walks Charlie did with us numerous times last spring, summer, and fall. These walks followed an old bike route of Jim's and Charlie's and involved walking through such really exciting settings suchas drugstore parking lots, out-of-use freight train tracks, and cracked and unweeded Jersey sidewalks. Other of our travels take us on grand tours of anomalous New Jersey suburbs (though there is always more to meet the eye) and, again and again, to Jersey City, form which we get a fine view of lower Manhattan (without having to visit it).

Life with Charlie is a grand adventure. Three times since I started writing this blog I've been fortunate to travel to Greece with groups of my college students---yes, those were some adventures, too. Much as I love Greece, I know the best adventures I've had are always those with Jim and Charlie, often (of late) in our trusty white car (which has been driven a shocking amount of miles, considering we have not yet had it for 2 years). We do go with Charlie, and it's a good, a great, life.

So let me tell you about one more day of this life, Wednesday the 13th--the Ides---of April, yesterday.

The day began at 4am when Charlie woke up. As I was groggily helping him prepare something to eat, it occurred to me that this early wake-up could presage a boy ready to go to bed earlier (these days, Charlie is often awake till midnight). On Wednesdays, an earlier bedtime for Charlie is especially preferable, as Jim teaches late on Wednesday this semester and Charlie insists on waiting for him, even falling asleep on the couch once.

Charlie had another good school day. His school was supposed to have an autism walk in their quite large parking lot, but, due to the rain, the walk was held indoors. Charlie enjoyed it, his teacher wrote. Later, while he was bouncing around on a huge exercise ball as part of his leisure schedule, the ball popped under him and he got (understandably) upset, but in a contained kind of way. Indeed, he cheered up quite soon. In the early evening, he had his third swimming lesson and while he did some powerful moves through the water, he was (his instructor noted) less focused than last time (but 4am wake-ups and popping exercise balls can do that to you). Driving home, he must have been starting to get really tired as he said 'bedtime' about every 30 seconds and I confess, at one moment I really thought of telling him to be quiet---only, of course, all these years of ABA and speech therapy have taught me, telling Charlie to be quiet is the surest way for him to be even louder and more verbal.

And who am I kidding? Once upon a time we worried Charlie would never talk and here I was thinking of telling him to stop talking!

I guess you could say that shows you how very far this boy has come. Just like his mother and father, Charlie has a lot to say.

A huge part of this adventure has been us learning to listen for his words, and, always, to enjoy the journey.

 

Pretty Okay: Few Words, Lots to Translate

Charlie woke up at 5.20am, showered, and came down the stairs exuberantly. It was 'no' to a walk and then he went to get his socks. Jim brought up the possibility of a bike ride; I pointed out that it was a bit early. Charlie (now besocked) returned back down the stairs and we asked him about maybe going back to bed for, oh, a half-hour?

And Charlie went back to his room and slept in until almost 10am.

Teenage behavior/sleep patterns, I would say. Jim also told me that, while I was in Ottawa for the Critical Autism Studies workshop, Charlie had not really slept much. Forgive me for flattering myself but, it seems that he sleeps better knowing that things are restored to their usual order, me/Mom home.

It's also the case that Charlie was possibly a bit worn-out after biking over 40 miles in 4 bike rides on Saturday; from putting in 25 miles on Sunday; from, again, the disruptions to his routine from me being gone; from a change in the weather (summery at the end of last week and gray and cool in the high 60s by Sunday afternoon). After getting home around 7pm, he went straight to his room and slept for a good two hours plus before waking up briefly, and staying in bed and going back to sleep.

He was in a very easy mood the whole day, even after being stirred out of the nap he'd fallen into en route to the country/small town bike path we drove to in the afternoon. We long ago noted that Charlie is in a bit of an inbetween and troubled state after he wakes up, and have learned to go slow and easy when trying to rouse him from a deep sleep. Sunday afternoon he was really asleep in the backseat of the car beside my dad but, after a few no's about getting his bike helmet on, Charlie got up, out, and (as the photo above suggests) right on his bike.

Things can always change. Lately, Charlie seems to be doing 'pretty okay' with things. There was that tough moment in traffic Thursday before last and some, ah, hijinks the day after, largely due, it seems, to stomach distress (and the fact that Charlie had just had his first full week of school and had started taking the schoolbus home).

Most of this we've figured out from what Charlie does, as he has---as is generally the case with him---said little. Which calls to mind the response of a friend to my essay on 'Autism and the Task of the Translator' in Ottawa.

Representing autism, and representing Charlie in various contexts (in my writing here, to his IEP team, to doctors and nurses, and many more) is a daunting and necessary task, I had said. I compared it to translating a poem or other text from one language to another and, in particular, to the task of translating a poem from a 'dead language' (like the languages I teach, Latin and ancient Greek). A translator is ever in danger of taking words out of context and imposing meanings on those words (and the poem, etc.) that are more in the translator's mind than in the original piece of writing. In translating, one is always in danger of producing a bad translation---a bad, poor, inaccurate representation that misrepresents the original.

And my friend pointed out that, while I was speaking about translating between languages, many of the communications that I described Charlie as using are not verbal, don't use language. What kind of translation is going on, exactly?

I have been thinking about this point quite a bit.

It could be said that 'what Charlie does' is a kind of language, though of a non-verbal kind: Can a language be a language without words. 'What Charlie does' certainly is communication. Very often, what I divine to be the meaning behind what he does (standing suddenly stiff with his arms held out to the sides and making an er sort of sound, rather loudly and with a vibrato), is not what most other people might think. (A point touched upon by Shannon in a recent post about a day out and about with her son.) I suppose others must think Charlie, when he does those three things, is (first of all) acting weird or crazy or some such. My reading of the situation is that he is working through some thought, something that happened, or some such, and the standing and the holding of his arms and the er-ing all help get the 'working through' process into action.

I'm not sure what else besides words (music?) one could use to try to explain/make sense/interpret 'what Charlie does.' But that's me and I am a person who seems to need to put things into language to make sense of them and think them through myself. Whereas, it seems more and more to me that language (or at least words) do not play that role for Charlie. Colors, shapes, sounds, music, motion---he's interested and (usually) more at ease with these, while, as Jim and I now know, too many words delivered in his presence irks him, sometimes to distraction.

And things being pretty okay right now, I'm quite okay with working on communicating with Charlie in ways other than words, even as I'll continue to re-render 'what Charlie does' in language, for my own understanding.

I've a lot more translating to do.

Bye Dad Hi Dad

A few thoughts of mine on two new studies regarding the detection of autism in infants over at Care2.com ending with some musings about how, even though it was not exactly easy to learn that our toddler boy had a severe and significant neuro-developmental-psychiatric disability, it was a lot easier to help Charlie through neurological storminess when he was carry-able. Too, a younger Charlie did not stand out in public---and attract attention he does not like--- the way he does now. 

Yet. Our now older, taller, well-muscled and athletic teenage guy seems to be figuring out how to detect storminess in himself as it's starting (rather than while in the throes of it) and to tell us what he needs to do.

This would be, to ride his bike.

Jim always has to accompany Charlie on these rides, of course. It is the case that Jim has been with Charlie (and a-bike himself) on 99.99999999999999999% of these rides, with the exception of my own highly unsuccessful attempt to ride with Charlie two summer ago, and a slightly more successful effort to run behind Charlie (he was only about 7 years old) while he pedaled ahead of me. Also, at one of his former elementary schools, Charlie used to ride a bike (someone had just left it at the school) in the parking lot and two of the (male) aides (whom Charlie adored---so of course, the next year these aides were transferred to another school site) took turns running after him.  Good times those were, very good.

And now. 

Lately Charlie has been saying,

'No Dad, bye Dad, all done Dad.' And then, 'Dad will be back. Dad back. Hi Dad!'

Charlie is (well, this is how I translate it) trying to express an idea that's complicated, a bit contradictory, complex: Dad is gone---therefore Charlie will not be going bike riding with Dad---that is (speculating here) disappointing, sad, puzzling---Dad will come back---and there will be bike riding and other sorts of fun such as orderly Mom doesn't provide (well, not in that exhilarating, aerobic way).

Wednesday I picked up Charlie after day #2 back to school (it was a good day, as Charlie's teacher---she came out to say hi---told me herself). Charlie said those above phrases when we got home and went up to his room to take a rest (napless, as it turned out). Jim came home, Charlie got up, they went for a bike ride, the first of what would be two.

I've been thinking a lot lately about how, as Charlie grows up, things get easier, and harder. About how, 'easy' and 'hard' aren't really the right words.

Yes, there are times I really miss scooping up my boy and carrying him (kicking and back-arching, but in my arms) to safety.

Yes, it feels pretty darn motherly good to hear Charlie call for his bike helmet and hasten out to the front yard so he can bike out his worries and anxieties. 

He certainly doesn't put my shoes amid the pantheon of his favorite things (see photo above).

If that isn't a strong communication, what is?

Language Is Just One Kind of Communication

The clunky title of this post sums up one of the greatest lessons I've learned in life with Charlie. 

Charlie is 'verbal' in the sense that he can say some words and phrases to express himself. He can say those words and phrases thanks in part to years and hours of speech therapy and speech-and-articulation practice in his home ABA sessions, and more practice throughout his schooldays. 

But as I've tried to indicate here, language isn't the form of communication that Charlie is himself the most comfortable with; that seems most 'natural'---for lack of a better word---to him.

Which is not at all to say that Charlie does not communicate, or that he does not want to communicate. He's always had the intent to communicate. When he was 2 1/2, a speech therapist/ABA therapist showed him how to use modified signs to say 'I want chip' and 'I want cracker.' Charlie learned these quickly and, too, that if he said certain sounds, he got what he asked for. As could not yet say final /t/ or initial /ch/ or initial /cr/ or /k/ at that time, we taught him to use approximations ('uh-uh' for 'cracker; 'ip' for 'chip'); over the years, Charlie learned to replace these with the actual words.

While Charlie now seems able to say most of the sounds of American English, he still speaks only in those one or few word phrases. At any one time, his working vocabulary does not seem to very large. And pretty much every word that he does say is something tangible, some person, place, thing, or an attribute thereof---is a noun or adjective. We've worked on teaching Charlie verbs, prepositions, pronouns, and articles but he very rarely says any of these in part as a matter of economy (why say 'I want to eat watermelon' when 'watermelon' gets quite the same point across---what else would one do with a watermelon besides eat it). Too, there's that question of how many words Charlie can 'retrieve' at once; if he's not able to call up more than a few, I would suspect he'd stick with the ones that most efficiently get his point across.

I rather wonder at Charlie's ingenuity at finding other ways to communicate. Music and singing. Humming and other non-verbal uses of one's voice. Arranging things, from his worry beads and iPod touch and a few other items, to food containers and plates and various other colored items. His gestures and body language, from the way he holds his shoulders to the set of his facial features.

To many, all of these might seem to be, well, singing, humming, curious arrangements of things. One does have to presume that Charlie is, in his various ways, communicating---take that leap of faith---and try to translate his communications, knowing that there is no dictionary or grammar. No textbook.

The 'communication needn't be all about language' point was in my head yesterday as Monday's summer school class had started with a lecture by an anthropology professor about 'what makes us human?'. The students were put into groups and asked to answer that question and, as we went around the room to hear their answers, I was struck by how often talking, speaking, thinking, having ideas and abstract thoughts were mentioned.

I thought about how, once, I would have answered just the same. But that was before I had my own boy, and he didn't 'just start talking' like the pediatrician said he would. That was before I put talking aside and watched Charlie to try to figure out what he was saying through behaviors (those head-bangs, those taps on flat surfaces) and the sounds, the not-words sounds, of his voice. 

Me being someone who's extremely fond of languages, of learning as many as I can, and of writing and reading and talking and all of that, understanding Charlie and, in particular, Charlie's communications, has been a daily effort, albeit one with many a 'eureka' moment to balance out the 'now what does that mean' times. 

Being so fond of languages, and of ancient Greek in particular, I was quite---very---glad to find myself in an extended discussion with a student Monday about ancient Greek prepositions used as prefixes in compound verbs, and the orthographic and pronunciation changes that occur in the imperfect and aorist tenses. I've been teaching this student ancient Greek in a tutorial, which is the best format to find oneself having to pull out two dictionaries, one ancient Greek grammar, and two textbooks to approach an adequate answer to said student's question.

In the midst of all this, I confess that I started to get the fuzzy-headed feeling, and quickly mentioned to my student that waking at 4am with Charlie had something to do with this.

We hadn't been surprised that Charlie had woken early as he'd gone to bed by 7pm on Sunday. Charlie waited an hour with the timer on Monday and then really really wanted a walk. I grabbed my sandals and out he and I went and was it worth waking at an early hour, as the air was positively cool and sweet. Charlie celebrated by running at top speed down our street.

He waited most patiently in the car for Jim and me and smiled good-bye when they dropped me off at the train, and smiled again when Phil Schaap came on the radio. Then Charlie had an 'off day' (as his teacher me over the phone) at school; he just wasn't himself and sometimes was visibly leaning onto a big exercise ball and pressing down his stomach, which seemed to be bugging him. He was ok when Jim picked him up and on a bike ride, and then, around 6pm, crashed on his bed almost till 7.30pm. Charlie was slow to wake and then immediately wanted a second bike ride; I got out the bikes and away sped Jim and Charlie. Once back, Charlie had a late, big snack/light dinner; typed on the computer; announced that it was 'bedtime' at 10.45pm and, nap or no, was out by 11.30pm.

I doubt I'l ever be able to learn the full extent of the grammar, lexicon, and idiom of Charlie's communications. In the meantime, I remain a most ardent student of his native tongue.

Eyes On My Back

 It seems that I have acquired eyes on my back.

Once upon a time, I used always to say that, for safety’s sake, I could never take my eyes off of Charlie, certainly when we where away from home at a store or other public place. If he wandered off, he wouldn’t realize that he had done such, or that I wouldn’t know where he was: Charlie would not know that he was missing. While he could say what his name was and what my cell phone number, he wouldn’t necessarily offer that information so a stranger. Even in our house, Charlie also required perpetual watching, lest he get into things he shouldn’t, start sticking CDs down a crack at the top of the staircase, etc., etc.. I was forever looking for Charlie, and at him.

Of late, I haven’t been.

It’s not that Charlie doesn’t need constant care. He can’t ever be left alone---underline, boldface, and italicize ‘not’ and ‘ever.’ Now that he’s older, when we’re at home, he can, to some extent, be ‘left to his own devices.’ Indeed, we’ve had some afternoons of late in which Charlie’s been watching videos on the computer, Jim’s writing emails, and I’m reading the Agamemnon to prepare for my summer school class.

Too, these days, it’s not so hard to know where Charlie is and, too, what his mood is. He’s often humming or saying some word or phrase: Bingo, boy’s whereabouts identified. There’s also the occasional stomp (sometimes more of a stompfest).

In general I’ve been thinking that too much scrutiny is more likely to fuel Charlie being edgy and even getting annoyed. He is older and certainly wants to be more independent----he needs his space. We’re very glad to give it him to the extent that it’s ok (much trickier when we’re out in public). 

Plus, I feel so attuned to Charlie after all these years and all this time together, that I can sense where he is and, to some extent, what he’s up to, without turning around (when driving him in the white car), without having to actually look and see what he’s up to. I’ve developed eyes on my back. 

Yesterday morning, my friend---he's an actor---whom I’m teaching summer school (a class in Greek drama) with---had us all walk around using our ‘back eyes.’ This was one of a couple of exercises we did that got us to ‘expand and contract’ our sense of where our bodies extended to, to feel and sense the space around us in other ways than looking directly at it.

As I was walking (slowly) backwards and suppressing the urge to turn my neck to see where I was going, it occurred to me that, for the past year, such a---how to describe it?---mental projection of myself, of my energies, has been something I’ve been doing with Charlie as a way of keeping the peaceful-easy-feelingness in our household. Somehow projecting my own feelings of ‘peaceful-easy-Zen-ness’ has seemed to help Charlie. I think back to how often over the years (through most of the years of Charlie’s life), I’ve been anxious, tense, stressed, on edge myself, concerned about Charlie and his learning, SIBs, what might or might not lie ahead of him, not to mention a host of other worries---what charged vibrations was I shooting into the air of our household?

Not saying we live a totally peaceful and easy existence now. But we have become increasingly aware of how sensitized Charlie is to our feelings, to some kind of ..... psychic energy? .... around him. Words, speech, language not being the modes of communication most natural to him----that he's most comfortable with---no wonder that Charlie is so conscious of all the other ways we humans try to get our point across, through gestures, the way we hold our bodies, the ways we move around a room. Over time, it seems that we have learned both to communicate, and to sense communication, in the ways that Charlie does.

And it seems to be working. Perhaps Charlie himself appreciates the implicit, greater trust we've been showing him, the confidence in him wafting through the air? The knowledge that, yeh, we don't have to keep staring at him from the front seat of the car cuz we know he's ok? Maybe even a-ok? 

Grumpy on waking on a day of hands-down terrible weather (humid, overcast and very grey, raining sporadically, hot), Charlie got himself out of bed Wednesday morning and the dressed, and then into the car with Jim. School went fine, Jim picked him up (I was teaching), Jim and Charlie went on a bike ride and got caught in a downpour and completely drenched. Charlie waited till I got home to use the computer to hear a couple rounds of Disney tunes (lately I've been feeling so conversant in these that, during my class, I was almost drawn into a discussion about the merits of The Aristocats---sure, it's not The Lion King but Paris with swinging cats, c'mon!). Charlie and I went for a walk in the same disagreeable weather; he was in good spirits and smiled pleasedly at some points. (I was the grumpier one; I do, not, like humidity.)

I always walk a few feet behind him, so Charlie's in my sight. Would he sense if I, or Jim, were not at his back?

After dinner,  Charlie was watching videos when he started crying. He stayed on the blue couch; I don't think it was the video in particular, though sometimes something can strike Charlie in a certain way and he responds as he does. I shot him a few glances (some very furtive) and went to cut up some watermelon in the kitchen. I said, 'I'm just cutting up some watermelon.' Charlie kept crying and I kind of stepped by the doorway that separates the kitchen from the dining room (which is where the couch is). I just wanted Charlie to know I was there and tried to send out some very gentle tendrils of 'yup, am here, not gonna get in your way unless it gets urgent.' I didn't say any of that, though, just something like 'feeling sad sometimes is very ok.' 

It's not, of course, easy to stand by and hear your child cry. At this stage of his life, running over, throwing my arms around Charlie, crowing 'are you ok?'---these are not what Charlie wants. 

And Charlie, after some long minutes, stopped crying and asked to see another video. And then, ran up to his room for a few minutes, and came back down for some soy vanilla ice cream. At some point, he also discovered that I had snuck two of his blankets into the washing machine. He wanted them out immediately, but stood, fingers fidgeting and folding into themselves, until I tugged them out and handed them---yes, wet---to Charlie.

I had a feeling that he had one more walk in him and, sure enough, Charlie put on his socks. Jim grabbed a bottle of water and out they went. The blankets were quickly whisked into the dryer and then replaced just as Charlie had them on his bed before he and Jim returned. Because, that's one way I try to tell Charlie, all is ok in the world.

Based on the alacrity with which he hopped into bed on returning from the walk and his smile, I think he got the message. 

At least, that's what my back eyes told me.

photo by jazzhaven

A Small Communication

The above photo shows Charlie's 'favorite things' as I call them. He refers to this whole set of objects as 'blue beads': Charlie often refers to a collection or a couple of things based on just one item, as if the part referred to the whole. For you literary types out there, this is a rhetorical device known as 'synecdoche,' and one could say that Charlie has a kind of synecdochal way of using language. The expression 'telegraphic' has also been used to describe his speech, which usually only includes the most important words, usually nouns, a few adjectives, and maybe a verb; his speech therapists and we, too, have constantly worked on 'expanding his length of utterance' but Charlie's default mode---after years of much prompting and requests to 'say [x y or z]'---is just to say as much as he needs to.

I mean, Latin, and Mandarin Chinese, don't have words for 'the' and people do (or did, in the case of Latin), just fine expressing themselves without.

For myself, I'm pleased that Charlie took enough interest in those blue worry beads a few weeks ago to start placing them with the other little items. He never does more than pick up the two strands of worry beads (one are of the Evil Eye, the other strand is plastic) but at first he completely ignored them. A student had gotten the Evil Eye beads for Charlie last summer and I picked up the blue ones on the last day I was in Athens earlier this year, but Charlie pretty much left both in random places on the floor until recently. He remains stalwartly faithful to the olive green strand I brought back after last year's Greece trip, twirling and pulling it and rubbing the beads in his long fingers. Happily, even though he takes the beads (and the other items in the photo) into the car, he has been leaving them there in the backseat or I would be, as you may imagine, a bit stressed about losing them.

(Worry beads at the beach: Yes, not a combo I want to be dealing with.)

Usually Charlie places the 'blue beads' (if I may use his term) in a rather unordered mass on the floor by the blue couch. Monday afternoon he set them down with a little more symmetry; I particularly noted his placement of the no-longer-working garage door opener to my in-laws' house with his iPod Touch and of the Mugen pop pop thing (not that he's ever been interested in making it pop) with my keys (yes, those are all my keys---only one for this house, all the rest for work). All those keys are exactly the same size and shape and Charlie has figured out (partially through trial and error, partially from me showing him) which is the key that opens our front door. Once inside the house, he keeps my keys. 

Foolhardy, you think?

Nah, Charlie keeps better track of my keys than I do myself. It's one way (there are a number other) of ways that his obsessive-compulsive tendencies and his (as it were) craving for order and routine come in handy, at least from the perspective of needing to locate the keys quickly. I've thought about taking off the keys for work and keeping them separate, and then realized that it was the sum total of so many keys, and that blue carabiner fastened to them, that had come to mean 'Mom's keys' to Charlie.

(When I went to Greece, I just left the keys with Charlie. Again I knew he would keep good track of them.)

As for why Charlie ordered his items so carefully Monday afternoon, I'm not sure. He had a fair day though he wasn't quite himself, getting upset at school when told he had to wait 20 more minutes for lunch (he'd had plenty for breakfast and a snack) and then asking throughout the day for crackers. Jim and I both suspected more stomach trouble---I guess I've been mentioning this a fair amount, but the combination of the recent ultra-humid weather and the medications Charlie takes, among other things, hasn't been (so to speak) very kind to his insides. 

As I noted, Charlie asking to eat more than usual and then not eating at all (even with some highly preferred foods in plain sight in the fridge) are both pretty clear signs of feeling (maybe) queasy.  After coming home and having his usual after-school snacks, he took a rest in his room (though without a nap), got up for his usual power bike ride with Jim, followed by a brief rest at home and a walk. He was not interested in eating a thing until much much later in the evening, when he must have been feeling much better.

I speculated, maybe Charlie made his arrangement of the 'blue neads' in an attempt to inject a little order to things?

Maybe. Or maybe I am (as I tend to) reading a lot into little things; something one does, when blue beads are what you have to go by.

Supercalifragilisticexpialidocious

Driving home from school on Thursday afternoon, Charlie asked to go to a fastfood TexMex restaurant. We hadn't really celebrated Wednesday's performance so I did a 360 turn and to the restaurant we went. Charlie was very serious (even a little grim-looking) as we waited, then broke into a pleased smile as he carried his burrito out to the car. 

He ate everything (chips too) quickly and returned to looking very serious. We were nearing home when Charlie said,

"McDonalds."

My first thought was, oh we gotta go. My second, wait a moment. 

"Put away your bag and lunch boxes." ("Boxes" because one's for lunch, one for snack.)

Charlie's face relaxed and he started grinning, and stayed that way till we were home. He grabbed my keys and his green worry beads and ran inside, happily.

I reflected:

In the past, I would have definitely taken Charlie straight to McDonalds as he requested, or seemed to be requesting, and against my better judgment, he having just eating a big burrito. But after the disastrous incident of him asking to go to another Tex Mex takeout place and completely 'freaking out' in the car, Jim and I have learned, sometimes (rather a lot of times?) Charlie, when asking obsessively for things, doesn't really want them; that he's testing us (gullible) parents. Too, it's on record that Charlie's gotten the food he'd ardently asked for and then thrown it and banged his head on the table (longer-time readers of these chronicles of Charlie may remember the time of the flying hamburgers). 

Teaching Charlie to ask and request for things---to say what he wants---has been a constant focus of his speech therapy and (when he did these) verbal behavior sessions; of many and most efforts to teach Charlie to talk and communicate. Certainly using words to get something desired is a basic function of language. It's perhaps one of the more straightforward skills that can be taught to a child who, like Charlie, has a language disability: A child is taught to use words, hand over a PECS card, make a sign, and she or he gets something. Teaching commenting and expressing internal states---stomach aches, headaches, a splinter in a finger, a pain from a tooth; sorry, anger, distress, unhappiness and emotions---is far more complicated. 

Charlie has some ways of expressing these. They're behavioral---neurological storms, whirlwinds, occasional tsunamis; self-injurious behavior, other 'challenging' behaviors (haven't seen much of these of late, since we've been doing all these walks and long bike rides); they require one to look at Charlie and look around. When he does use words, the words don't always mean what they mean on a surface level. 'Burgers 'n' fries' isn't (necessarily) a request for said items, but indicate distress, perhaps because (once upon a time) Charlie said those words when he was distressed and trying to comfort himself by thinking of something pleasant.

So far efforts to teach Charlie to say things like 'stomach ache' when he asks for food even though he's just eaten a filling meal haven't been successful if by 'success' one means that he's learned to say 'stomach ache' instead of something else: Always something to work on. On the other hand, Charlie has been successful about not flying off the proverbial handle when he doesn't get what he asks for. Indeed, I would say that he often seems rather relieved that he doesn't get what he asked for ('McDonalds').

Because maybe he wasn't really asking for anything at all, but just wanted to talk about the Golden Arches? 

I mean, how often does any of us just say something because we want to say it, because it crosses our mind? 

If everything I said was a request, I'd feel quite exhausted and unsettled all the time, being always in a state of asking, of having to ask, others for things. Charlie, again like anybody, sometimes just wants to talk for talking's sake, to let us know what he's thinking about, what he's feeling. Maybe even just because he likes saying certain words. 

Why else would anyone say supercalifragilisticexpialidocious?

It is the case that, in our household, some far less 'precocious' words---'walk,' 'helmet' (bike kind)---always mean business; mean what they mean---or at least, they do right now. Walks and bike rides are clearly preferred activities that Charlie asks for to assuage his energy, nerves, anxieties. I would think those words have gotten some strong associations linked with them, of (one hopes) a highly positive sort. 

For a child who does not talk too much, Charlie knows a thing or too about, I would say, language and words, and their power.