We Go With Him

Autism and McDonalds

Clearly exercise is a big part of life for Charlie aka "Mr. 24 Miles on a Friday" (he and Jim are readying to go on long local bike ride #2 in the photo above -- an evening ride, so they are suited up with neon vests and (not that can you see them) mini bike lights). Physical activity (daily, aerobic) has been key to help Charlie with the regulation (to the extent he can) of behavior storms and even played a role in helping his speech and focusing (if not his sleep, though after the 24 miles Friday, he didn't ask for a walk and went to sleep at a decent, before midnight hour).

A good diet, with as few processed foods as possible in the diet of a teenage American boy, is also important. I wrote about such, with some references to the worrisome (anxiety-provoking) question of life post-school for Charlie here at Care2.com in a post about Jamie Oliver's Food Revolution (apparently May 19 has been declared 'Food Revolution Day') (I got a bit on my high horse in the post, I confess).

Writing the post got me to thinking about McDonalds.

About how it is kind of unavoidable for most America kids to go there; I myself used to love a cheeseburger, which Jim thinks is laugh-off-the-couch hilarious because I've been a vegetarian since I was 13 and I used to go around in circles explaining to his mother what I would not eat,

About how, while Charlie was on the gluten-free casein-free diet (which he still kind of is as we have found dairy in particular to be really bad for him, plus he is such a creature of habit that he just doesn't eat lot of gluten-y foods because they were off limits when he was little), McDonalds' bun-less burgers and fries were a readily available treat.

About how it's not so easy to find things he likes, let alone things to treat him with.

About how parents with kids like him just want to indulge a kid with so many challenges because the world is just so very challenging and pleasures often few and restricted. Charlie certainly likes eating so getting him things he likes to eat has long been a way to, yes, treat him, though he has often become highly obsessive about his favored foods.

About how McDonalds, ever so reliable and offering the same menu at every one of the dozens of locations across the US we've patroned over the years, has sometimes seemed just made for Charlie's obsessive need for order. And et me tell you, as a parent, who hasn't felt a massive sense of undying gratitude on seeing those familiar golden arches after a wretchedly long time in the car with a woebegone child?

About how often, as a parent, I've wished there weren't so d****d many McDonalds everywhere and they wanted to recognizable with those d****d golden arches.

Since he was able to talk (a little), saying 'I yeh uh-uh' for 'I want fries' when he was 4 years old, McDonalds has been something Charlie, with his limited repertoire of words, could ask for and, hence, we had to take him there when he did ask.

But lately, Charlie really has not been asking as much to go. He always eats more once home after eating McDonalds; sometimes he has asked for the McDonalds and barely eaten any, as he if were only asking to go for the sake of asking to go, but the food wasn't what he wanted. Leading us to think, Charlie is discovering fast food isn't fulfilling, or filling, and he can forego it. He might even be figuring out that he doesn't feel so good after eating a McDonalds meal.

Which is all pretty revolutionary. I think.

 

A Horse Rider, A Pit Bull and the Wrong Kind of Chow Fun

 

Despite three unsettling events on Sunday, Charlie kept his cool (though a little lag is always possible).

On the bike path in Jersey horse country on a beautiful sunny day, while pedaling at a slow speed, a woman on a fractious horse chastised Charlie to 'slow down!'. Charlie was in tears when Jim caught up to him after offering some no nonsense wprds to the rider and her entourage. Charlie was somber at the ride's end but nothing stops him from pedaling steadily on the trail.

On the return leg of a 12-mile ride at home, Charlie averted riding into a pit bull whose 14-year-old owner had chanced to look the other way. The dog was not on a leash and Charlie was able to swerve his bike away just in time (or his bike tire would have run over the pit bull's, um, neck). 'So call it a very good day,' Jim texted me.

Uh-huh.

To celebrate Charlie's Chinese birthday (4TH MONTH, DAY 9 = APRIL 29, as my parents emailed me on Sunday morning), we thought we'd get Charlie some chow fun aka 'brown noodles.' I called in two orders only to make the mistake of asking for the 'sauced' version instead of the 'dry' one, and to realize my error when we got the food and  I saw separate containers for the sauce and the wide white rice noodles: Charlie likes them mixed together and pan-fried. 

He poked at the contents of the containers and handed them back to me in the car. The thought came into my head to go to another Chinese restaurant that has the brown noodles too, but that is farther away. I suggested, maybe we could go tomorrow?

'Tomorrow,' said Charlie.

He is grasping this concept and what it entails far better, I would say. Just a short time ago, saying we'd do something 'tomorrow' was tantamount to having to do it 'today' and 'right now.'

Charlie sat quietly in the car listening to his iPad. At home, he poked a little more at the noodles and tried some lo mein that was pan-friend. But he really likes the chow fun best.

I drew on my secret store of Chinese sausage and quickly cooked some with white rice and  Charlie ate this (well, mostly the sausage, lop cheung) and a bunch of apples and a few frozen fries after a brisk walk (and a 56 mile weekend on the bikes).

Then he went to bed with some Disney music -- lately he seems to like Annette Funicello singing classics like 'My Little Grass Shack' and 'Beach Party Tonight' -- playing and was sound asleep around 10.30pm.

 

Another Wednesday Has Come and Gone

 

Wednesday has been decidedly unpopular around here as it's the day Jim teaches all day.

Meaning that (taking a more Charliesque view of things), it is the Day Without A Bike Ride.

Happily, with the spring semester almost over, there remains but one more Wednesday, next week's. I was feeling wary after last week's book throwing and fit of soda dumping. That Wednesday had begun with Charlie in smiles and so did this one: Would these remain?

For the most part, yes. There were two walks without too much running, in very pleasant cool spring weather. There was a moment of mild panic/worry when Charlie, around 8.30pm (about a half-hour after I had given him some melatonin), asked to go to the convenience store. This meant one thing: He wanted to get ice cream -- something we have been completely avoiding since realizing the very bad effect it has on his stomach and, subsequently, his head.

I talked about waiting for Jim to come home, maybe going tomorrow (but really, maybe not; Charlie being Charlie, going to the convenience store and getting vanilla ice cream are one and the same activities). Then I went to the kitchen as Charlie stood standing and thinking and whisked out a secretly concealed box of brownie mix.

We made those and I cut up some fruit and asked if he'd like the timer?

'Yes, timer,' said Charlie and ran upstairs to get his iPad.

He spent a good deal of the rest of the evening with iPad to ear, for over two hours. After 10.30pm we heard Jim's voice (he was on his cell phone) and I opened the door. 'Dad, dad!' said Charlie.

Once Jim stepped inside Charlie insisted that he immediately take off his shoes and socks. Charlie arranged them neatly, then stood looking at his iPad. I figured the timer still had a few more minutes. But what would Charlie request once the timer went off?

I readied 'why it's too late to go out now' explanations. The timedrbuzzed.

'Bedtime,' said Charlie and went up to his room without any further ado.

He was asleep at midnight after some video watching.

 

The Sour Taste of Nostalgia

Since Jim and Charlie started doing their long (11 1/2 mile) local bike rides (Jim remeasured the distance), they have been in the vicinity of a hamburger stand we used to frequent when Charlie was little. We had stopped going there years ago (not soon after Charlie threw a plate of fries) and he had adamantly said 'no!' about returning. But they first went the Monday of Spring Break and then last Sunday (after Saturday's storm) he had asked and enjoyed his burger on the metal counter outside after dousing a plate of fries with ketchup and not eating them.

Friday he and Jim stopped there on their bike ride. Charlie had thrown his water bottle at school and broken it though had an otherwise good day. He smiled on the bike ride and went up to his room afterwards.

When he came down about 45 minutes later he had a certain glazed, affect-less look on his face and hovered around me as I cut up a watermelon and cleaned up a little in the kitchen.

Then he threw a box of books, cleared off a row of photos from a shelf, dumped the bag of empty aluminum cans. He banged his head and screamed and grabbed and tried to bite. While Jim stayed with him, I grabbed a red mat we had bought after consulting with Charlie's school and he went right to it and knelt, still screaming and crying and banging. But seeing the mat gave him a focal point and he calmed far faster than on Saturday. He sat for a long time in the brown chair, asking for a walk (we counseled 'later' but actually never went) and yelled 'Rocco Portia!'. The latter is a reference to Jim's brother-in-law and his dog, who used to (the dog, that is) terrify Charlie when she ran into his grandparents' house. Charlie cried. After almost an hour of sitting together, Charlie seemed ok and went upstairs.

He came down for a snack in between turning on the shower twice. At midnight, he turned on the shower again and the sound of the toilet flushing meant, he must be feeling better, finally. After using his iPad to watch some videos and 'type B' for a few rounds, he fell asleep.

And we were left thinking, best to skip the hamburger stand awhile. It was always a place fraught with memories: We went there at a time Charlie was having lots of difficulties in the public school special ed programs in our town. Or maybe the food always has given him stomach trouble (why he once threw the fries). Maybe that's another reaons why he's been unable to sleep for the past couple of weeks?

 

Exploits, Small in Scale

 

It only occurred to me after he had gone to sleep, but Charlie did not say 'burrito' once on Friday, after perseverating hard about that food item all week.

It has been a good week for him, with good, great and even 'awesome' days at school, fast-paced bike rides and, except on Thursday, evening walks with Jim and me trailing behind (for some reason, Charlie did not ask for any walk on Thursday) and especially Friday night as Charlie, quite recovered from the February cough cold, ran for about 70% of the time.

Friday we made another grocery store excursion. Charlie got some sushi and said 'crackers' and, after I had said, 'sure,' went to get the red box. (Hmm, does he like them so much in part because of the red box?) This store has for some reason decided to set the crackers above the ice cream case meaning that I usually have to stand on said case or go find some clerk to help me nab a box. Charlie, of course, does not have that problem: He just stretches out an arm.

Jim spent this last weekday of our spring breaks sticking branches that had fallen off the trees in our yard into the back of the black car and driving them to the town recycling center, and grading some of the 100+ essays his students submitted as the break started. I made a first inroad on a project due in June (no time like the present, carpe diem and all that), gloried in the fact that I had finally completed all the forms for Charlie's summer camp application (which Jim duly went to mail), and read a book. And decided it was high time to start memorizing some of the Iliad too,

... Διὸς δ᾽ ἐτελείετο βουλή,

'and the will of Zeus was fulfilled,'

so to speak a bit loftily about our small adventures.

 

Spring Break Day iv Date Lunch

Jim and I had lunch Thursday at a hamburger stand we used often to eat at with Charlie. For whatever reason -- noise, smells, his changing eating habits -- he says a definite 'no' now when we ask about going. But we still wanted the grilled cheese and chicken parm; a nice unhealthy lunch it was.

Charlie hadn't gone to sleep Wednesday night till 2am, if not later. After mid-70s and up temperatures, the weather turned cold and damp, so yellow jackets were in order for a bike ride and Charlie's green parka for an evening walk. I think he has been looking a bit wistful at not having to wear these this week, somewhat (perhaps) the way I miss wearing wool cardigans in the summer (though I do find ways to wear them -- air conditioning and all that -- and a sweater is not a parka).

Thursday would have been our last day in Greece had we gone, and it would have been spent in Athens, visiting the Acropolis, the wonderful new Acropolis museum, roaming around the streets a last time, and visiting with my friend Emma.

While there is no question that I miss going (I know I have mentioned it several times), I have to say, Charlie has been a content and often-smiling child not just this past week, but in the time before. He got up groggily but on time for the bus, had a fine day, waited very patiently while I changed the music on his iPad. Some stomach distress has not (so far) seemed overly to bother him. I've been reading about Homer, and reading Homer himself.

And that grilled cheese was really good.

Simplex Elegans: Visual Food Schedule on the iPad

 

I made this picture schedule (using Pages and the Storyboard template) to help Chalrie only eat some things on some days. I saved the schedule as a photo (jpeg file), emailed it, then saved it on his iPad. He can X out days using the Doodle Buddy app.

Charlie wasn't quite sure what to make of the schedule earlier this week. I kept showing it to him and modeling X'ing out each day. On Friday, following a decent day at school (though he petered out by the end), he went on his usual bike ride with Jim but didn't (as Charlie has been doing a lot of late) spend much of the bike ride asking for a burrito or other food item. Charlie just rode his bike.

Friday was a night I had put down for him having a burrito so (after looking at the schedule together), we went out for one. Charlie enjoyed it (and kept it down). 

I'm planning on making a new 'food schedule' for Charlie every week and slipping in different foods in what is something of a simplex elegans -- 'elegant in its simplicity' -- solution (which indeed describes some of the best 'innovations' for Charlie).

 

The Rice Cooker Always Comes In Handy

 

A change in the weather for the warmer had the expected effect on Charlie Thursday night:

Can't sleep.

Full day of school, fiercely paced bike ride, 3 walks under the stars.

(The first came with loud honking as we were crossing in the crosswalk; the second with an especially energetic bout of running; the third with a dog just visible at the edge of the field we cross in the last stage of the walk.)

Charlie had asked prior to walk 3 for ice cream, or rather he had asked to go to the convenience store where we get the ice cream. Jim and I having made a definite connection between ice cream eating and severe thymic distress the next day or the day after, we did a little hemming and hawing and suggested that we'd get it 'tomorrow.' 'Tomorrow' said Charlie and, just in case he still wanted a snack, I put some rice andChinese sausage into the rice cooker and we went out for walk 3.

Jim came with us too. The dog and its owner were not the only others we ran into: There were at least two other dogs and dog-walkers and a man who, Jim noted, was smoking a cigar.

When we got back home, the rice and lop cheung were already, and perfectly done, and Charlie ate every bite and went to bed.

 

Doing Christmas Charlie's Way

Yellow jackets were still in order for the two bike rides of Christmas but it's actually been positively balmy here with temperatures in 40s F/8 C, especially as a year ago we had one of those candidates-for-snowstorms-of-the-century on December 26.

 

Charlie pedaled vigorously and enjoyed the rides, despite sniffles and a cough that, along with two fierce bouts of crying the day before, led us to conclude, he must have a cold and/or a sore throat. This supposition was reinforced  by Charlie (1) sleeping in past 11 am (after briefly getting up before 8am) on Sunday; (2) napping in the afternoon after bike ride #1; and (3) going to bed at 7pm and sleeping soundly.

Maybe, too, he really just needed to 'refresh his batteries' after the Stresses/Changes in Routine of the Holidays, not to mention a bit of weather on the wild side and just a lot of too much.

My mom and dad got dim sum and noodles for lunch and Charlie helped himself to most of the container of chicken chow fun (once known as 'brown noodles' -- almost all the major 2+ word items of Charlie's vocabulary have a color word in them).

Charlie didn't care for either of these foods pictured below, homemade cranberry bread and store-bought 'Phoenix claws' (= chicken feet) that, my dad assured us, were terrible and not because they're chicken feet. (But the noodles and other dim sum were very good.)

After sleeping off a good lunch and a second local bike ride during which many people called out 'Merry Christmas!', Charlie asked for one of his favorites, a burrito. We had had a feeling that he would ask for this and, too, that we would have to address the tricky issue of telling him the store was 'closed' --one of those potentially loaded words for Charlie.

Jim and I decided that the best thing to do was, rather than confuse Charlie further with lots of language and explanations -- when he hears that such-and-such a place is closed, he seems to have some cognitive dissonance in hearing the name of the place (meaning that we're going to go to it) along with the word 'closed' (meaning that we won't have access to it) -- we all got in the white car and drove to the burrito place.

In previous years, knowingly driving Charlie to a store or restaurant that we know would be closed would have been more than ill-advised. But in the past several months, Charlie has been handling seeing that the door of said place won't open and repeating 'closed' after us as we point to a 'closed' sign in the window. Harder for him is hearing us say, while still at home, that X is 'closed' or that we can't really go to 'Y' now -- better that he see it for himself.

The burrito place (and the entire plaza it was in) was indeed dark when we drove by, as was every Golden Arches we passed. Jim asked Charlie if he'd like to go to the one fast-food franchise we knew would be open on a major holiday (because we went to it last year). Charlie said 'yes' so off we went and, instead of a penny, we got this in change:

A 2 cent euro piece from a Garden State Parkway McDonalds -- you never know who passed by earlier.

Charlie didn't want to eat the two burgers and fries that we got him; I suspect the unusual circumstances of driving here and there to darkened stores and then heading up the Parkway played a part. He was glad to go back home, see Gong Gong and Po Po and dine on crackers and fruit for his Christmas dinner, and then head up to bed.

I made a neat pile of his presents by his shoes so Charlie would notice them when he's getting ready to go out for the next adventure.

 

Eating and Sleeping

The title describes pretty much what Charlie did after what was, his teacher wrote, an 'excellent' (I am quoting Charlie's teacher exactly) day at school.

I'm never surprised at Charlie capacity for consuming plates of food. Watching him watching some fries spinning around on the microwave carousel, it occurred to me that the top of his head seems definitely to be shooting ever closer towards the level of the tallest cabinets.

He betook himself to bed just around 6pm. By 8, I listened for signs of stirring; none, nor were there any just before 10pm. I estimate Charlie hadn't slept for more than 5 hours on Tuesday night; I had thought he would be tired, though not that tired.

Jim came home a half-hour later and so this week's Wednesday waitathon passed.