We Go With Him

Actually Typing B

A significant change in the barometric pressure made for much more easeful bike riding, walking and generally being on Wednesday.

After a walk (which involved getting sprayed by a sprinkler in the dark -- hey!), Charlie wanted to 'type B ocean' on his iPad. We did a few rounds of Teletubbies + word dictation and then I thought I'd try an actual type B.

'B-a-r-n-e-y o-c-e-a-n' I spelled out. Charlie typed, took a quick glance at the choices and then said 'type B ocean.'

Well, he had never seen a video -- does it exist? -- of 'Barney at the sea' (though there were those songs from the Imagination Isle CD about the sailor going to sea sea sea ). I dictated 'B-a-r-n-e-y r-a-i-n-b-o-w.' Charlie typed and looked at the screen and said 'bye bye mom.'

We could hear the familiar sounds (first heard ca. 1998) of Barney, Baby Bop, Michael, Tasha, Min and Cathy singing about shapes and all the colors of the rainbow.

 

Night Owl in Stormy Weather

I don't know how he does it. Charlie woke around 3am Tuesday morning and stayed awake in his room and the brown chair and walking and got last-minute nervous just before the bus came as a woman with her dog couldn't figure out to walk on the grass or in the street as the sidewalk is still blocked off.

Charlie had a great day at school with a great swim in the pool.

Aided by a juice pack I had stowed on the bag on Jim's bike, Charlie endured 93 degree weather for 12 miles.

He handled a detour en route to get groceries as there was a two-car accident.

He walked, he cried ferociously, his face froze hard.

It passed after 35 minutes and a spatter of rain fell. The wind was swirling and the air losing some of its heavy wetness when we all 3 did a third walk. It was raining, though in a sporadic way, as we walked the last segment.

Charlie went to bed but seems to be on one of his 72-hours non-sleep periods as, for all that he woke so early, he is still awake.

I think he also feels himself waiting for the storm truly to break, the rain to pour, the wind to bellow and the air ease up.

 

Too Much in the Sun

Global warming made it possible for Charlie and Jim to miss nary a day of bike riding this winter but I had a feeling the piper would have to be paid.

Memorial Day 2012 it was 92 degrees Fahrenheit in New Jersey and we decided to try a new bike path in a beautiful park with butterfly gardens and Tudoresque houses where the staff for the estate that is now the park once lived.

Actually, there were supposed to be 18 miles of bike paths in this place. It's not too far from where we live now and is actually extremely close to a sprawling central Jersey town that would not be of any significance to most people but is to us because, after we left St. Louis to move back to New Jersey so Charlie could attend school here in 2001, we lived in that town, once all fields and now all condo developments and sHopping plazas with every chain store none to Americankind.

The park bike path place has only recently been renovated into its current state; we used to drive by it everyday when you weren't allowed to drive through. Charlie, who had slept in till 9am, seemed game to go and relinquished his sweatshirt to the backseat of the white car. Hot sun and no trees and bird watchers and all, he and Jim got in about nine miles but, it was a new place for Charlie and it was very hot.

And as Jim put it, Charlie is not used to riding his bike with trams (loaded with flora and fauna admiring folk) driving towards him. And, lovely as the park was, it was perhaps a bit too orderly for a boy who is used to riding uphill, around pit bulls, and past Garden State Parkway on ramps.

Coupled with the fact that Monday was a Transition Day between a long weekend and back to school, Charlie was unsettled. He tried to be settled at home with his iPad and usual pacing and snacking on apples but he was in his hurry up please it's time mode in which he is driven to do all the thingS he usually does in a day in short order as if doing so will shorten the time till which he can reach his goal.

I.e., school bus.

After 45 minutes On a timer, he and Jim were out on the bikes for a long local ride. Jim texted me that Charlie cried the whole time except for when they were in the woods where it's shady. They had a water bottle but Charlie refused to drink from it and we both agreed (over texts) that, while Charlie has my darker, tan-able coloring, he is possibly more susceptible to sun and sunburn like his Very Blond Dad than we have reckoned.

In which case, we are reckoning very late but I do think I've figured out more about the mystery of Charlie going to banging pieces in the car too often on the way home from the beach, from bring too much in the sun.

After the crying, hot ride, Charlie downed some sushi and fruit and a lot of fluids and was better, then nervously wanted one last outing so, in the spirit of we just had to get him to Monday morning, we went to our local McDonald's which is very local (3 minutes away if not 2). He smiled in the drive through line and ate none of the food, wanted to type, wanted to walk, wanted to go up to bed, moaned as he fussed over arranging his items in his room and I turned the air conditioner way down, second floor bedrooms in our lovely 1920's house not cooling down as much as we might wish.

Charlie summoned me with a 'tickle mommy.' He was smiling and wanted a drink and crackers.

Of course, I provided both.

 

Typing in His Very Charlie Way

Amid bike riding (22 miles on Sunday for a 50 miles weekend), walking, pacing, stomping in certain areas of the house where the floor has lines (hardwood floor or linoleum squares), and of course, eating (including a frozen fry and apple snack at 11pm because a teenage boy's clock is, truly, in his belly), Charlie has been typing on his iPad.

Lest I give you the wrong impression and you think he is typing phrases and sentences to express wants, states of mind and conversation, he is typing two-word phrases beginning with 'teletubbies' and about 25 (give or take) nouns, verbs, adjectives or prepositions (most in English) that I have discovered are good search terms for a good range of Teletubbies videos. He is also only typing into the little search box on the YouTube app.

It's not proto-communication by any means. It's to watch snippets of Teletubbie videos that the three of us have been watching for 13 years, give or take. I know them by heart as I am sure Charlie does and as he scans the rows of videos I think of Iris Murdoch at the end of her life with Alzheimer's watching Teletubbies and The Fire and the Sun.

Is it useful? Better than nothing?

Oughtn't I to be shaping it into something else, trying to have Charlie type on the Notes or Pages app or showing him the words on a piece of paper?

It's a something of a yes answer to all. I've often thought that if we could find some format that provided Charlie with a motivation to write or read, it might be the key. Perhaps we have found it, or something on the way to it; it is not likely that Charlie will encounter the word 'Teletubbies' too much out in the world.

From all the repetition, he can type 'Teletubbies' on his own as well as 'favorite' and 'Kinderreime,' these being words I had found useful for finding videos he liked, when he was typing on a laptop before he had the iPad. 'Kinderreime' is German for 'nursery rhyme': There is a Teletubbies nursery rhymes video that Charlie loved when he was little and, one day, I had thought to search in foreign languages for videos, on the theory that such would be more likely to elude the copyright police. 

He is also close to typing 'tree' on his own. I can see him smiling sometimes when typing in 'favorite' and 'Kinderreime,' pleased that he is typing on his own.

Where will it lead?

I have been refraining from imposing too much didactic mom-order on Charlie's typing. I've done that before with some things and killed them, undoing Charlie's interest and most likely confusing him with my teacherly ways. Last night I had him type Barney with another word but the results were not of purple dinosaurs but someone's dog.

So 'type B ocean' remains for Teletubbie videos. We've been having a few sessions a day of this, often before bed and the trick is that I be willing to sit with Charlie as he types and types and types. It hasn't yet occurred to him, he could just do it on his own and so I feel like Annie Sullivan may have, or an anamensis.

I am enjoying it. Few have been the times that Charlie has ever shown interest in the written, the typed word.

 

Change, However Little, Is Always Felt

 

After a late morning walk (because Charlie slept in), I mentioned that he might leave his sweatshirt in the car when he and Jim rode bikes in Jersey horse country as it was going to be warm (88 degrees). The above photographic reveals Charlie was able to make the sartorial shift.

He did not do so on the two other walks and one bike ride (30 mile day) he did.

Little things seem t be causing Charlie the biggest disturbances. Friday he and his bike stood still in the street for 20 minutes because a cement truck was parked at a slant three houses down, as a neighbor was putting in a new walkway. They are very kind neighbors and, once Jim and I could see that Charlie was not budging with the truck in his way, asked the truck briefly to realign itself, till Charlie biked under the cement pouring shoot and down the street on his way.

On the way to and from the bike path, Charlie called for my parents. The second time, his distress deepened and he cried; I think he remembered they had been with us when we were last at the trail.

He held it together and then got the sads again in the evening. I sat at the bottom of the stairs in the brown chair and waited, Jim nearby.

Half an hour passed and Charlie called me up, wanting to type on his iPad. And a snack.

Ho Hum Holidays

 

Monday is a holiday here in the US, Memorial Day. In New Jersey, it is also the start of the summer 'go to the actual real Jersey Shore' season. Once, we would have been scheming how most quickly to get Charlie down a traffic-choked Garden State Parkway to his beloved beach to swim.

But after a few years of misadventures centering around the central fact that Charlie is become a super swimmer, better than his parents, and brooks no patience to be dragged back to the sand, and got behavior storm mad when unable to swim as he felt called to, we have called a moratorium on the beach. I don't think the three of us are minding it, either, Charlie having discovered his forte in biking at least a dozen miles a day; Jim loves these rides just as much.

We felt sad about ceasing beach visits last year. Charlie in the ocean, boogie boarding, is a sight of beauty. One day we will return, when we are all ready for a new phase.

For now, we ride bikes, we run, we walk (and we are quite fast). Too, Charlie, and therefore all of us, seem best off without holidays, diversions from the usual order of things and the peaceful-easy-feeling-ness we all more than appreciate.

The most eventful thing to happen on Friday was that the cars, whose motorists are not so well-disposed to riders on two-wheelers (in Portland we are not), were braking for a big box turtle making its way across the asphalt in New Jersey's urban suburbia. Charlie himself just biked around its hindquarters and then continued on his way, as he does every day.

 

Not Everyone's Gonna Be a Rock Star

Jim and I drove up to the Big Autism Center on Thursday morning to see the spring concert and to see the Charlie's back in his teal blue shirt (just being precise with my colors) as he exited stage right. An aide signalled to us and then Charlie's teacher appeared and said he'd been grabbing and was on his way to being very agitated. The principal came by and told us Charlie was sitting on a bench by the cafeteria with his head down, same as he does at home in the brown chair.

We listened to the students sing 'The Rainbow Connection,' 'Candyman,' and "Singin' in the Rain' (that would have been Charlie's song). Charlie, on being asked if he'd like to go to the concert, had said no and we slipped out.

After Charlie got home, the note from his teacher said that he'd gotten in a good mood as soon as the concert was over and been in the best mood he'd been all week.

This spirit prevailed through a bike ride (including heavy-duty honking by drivers -- happens when you bike in city streets) and after a nap. Charlie and I went for a walk, he ate a little and typed a lot on his iPad to see videos. He went to his room and ran down the stairs a couple of times and was asleep before midnight.

Week-long stage fright?

There have been some five concerts at Charlie's school since he started there and he's participated in about half.

Not everyone's meant for the stage -- not that Charlie likes just to be a watcher in the audience.

As is known, he'd just rather be in motion on the road.

 

 

Butterflies Of a Different Sort

 

For the third straight day in a row, Charlie got very upset at school. But Wednesdy he worked through it and things did not escalate.

It was still grey and humid, but with the occasional peak of blue sky and a cool bit of breeze. This made bike riding much more pleasant and two walk-runs too, one at dusk and the other under the stars (not that we could see them for the cloud cover but they have to be there).

Charlie went to sleep at 11pm.

Then he woke this morning around 4.30am. He got dressed and put on his shoes and sweatshirt and was primed for a walk, but waited with a timer for an hour.

The sky was white and the air had that heavy feel again: I do think he senses the storms and that affects his sleep. Plus, Memorial Day is on the horizon and he has Monday off from school.

Plus, this morning there is a concert at the Big Autism Center and Charlie is to perform with his class and Jim and I are both going and maybe those butterflies are flapping around in his stomach. So to speak.

As When a Butterfly Flaps Its Wings

 

Since last Wednesday night, Charlie has been going to sleep at a reasonable hour and sleeping soundly.

Tonight he is wakeful. But there are a cloud of circumstances for him to contend with, from my parents' departure Tuesday to a predicted week of wet, heavy humid air, rain and grey skies, to Jim and me being finished with teaching and therefore home for the summer.

The latter was a change that Charlie's teacher reminded me about when he called in the early afternoon. Charlie has gotten upset in the morning; aside from the other reasons, his teacher noted how us being on 'full time home mode' had unnerved Charlie before. It's the kind of change that certainly has benefits (no bike ride-less days) but for Charlie, change (minute or grand) is change, is something to get used to.

Charlie was frowning getting off the bus and zoomed upstairs to check and see that yes my parents were gone. He cried out and stood mopily. As per his request, I got out the bikes with him watching me and he and Jim did the full 12 mile route: The sky was mostly grey but there was no rain.

Charlie got in more exercise -- two walks -- and I dictated several rounds of combinations of words for him to type in the YouTube search box.

For a time, he took up his post in the brown chair at the foot of our stairs, a few minutes before 1 am, then went up to bed  and right now the music from his iPad is 'Bella Notte.'

Commencement and My Post-Birthday Boy

At graduation on Monday for the small college I work at, I clapped and smiled broadly -- beamed -- as certain students filed by, some of whom I could still see sitting in my old office -- just arrived days before from Bulgaria or Nepal -- scanning lists of courses and listening to me explaining the core curriculum requirements yet again; others whom I spent 10 days with in Greece on three separate occasions; and yet others whom I listened to so often, talking about GPAs, closed courses, essay deadlines, their parents, the next test, the job that seemed so good that wasn't working out. I sang 'The Star Spangled Banner' and what I knew of my college's alma mater and took photos and clapped some more.

A colleague -- he and I started teaching at the college in the same year -- observed that he didn't express his congratulations so exuberantly.

It wasn't the moment to explain it to him, but, what else would you expect from someone who's spent 15 years cheering on a big-headed baby become a boy become a guy to hold up his head, put one foot in front of the other, say 'uh' when we said 'uh,' point to the letter W, keep his feet on the bike pedals, eat two bits of an apple? from someone who says to herself 'progress' about her teenager who throws a box of Classics books then sits, crying and moaning but sits, in a big brown chair, instead of slamming his head on the hardwood floor?

Charlie is always with me and so I felt no surprise when I saw the number for the Big Autism Center flash on my cell phone, as the 'College of Arts and Sciences/School of Business Administration' students were receiving their degrees. I got up, climbed down the platform and went backstage (graduation was held in a large entertainement venue): Charlie was having post-birthday syndrome: too much to eat of what he likes too much, lag after a happy afternoon of being social, anxiety because my parents leave on Tuesday.

His teacher said he just didn't look like himself. We also talked about the wet, rainy weather that was ruining most of the photo-opts for the graduates. Charlie's teacher said he would call in an hour and let me know how Charlie was doing and I went back to my seat and calculated that by the time I made a grand exit off the stage (yes, folks, the show always stops for Charlie), dropped off my cap and gown (so I wouldn't receive Reminders that I had failed to do so), driven fast up the Garden State Parkway, run home to get Charlie's meds (I know, never leave home without them), hurry up to Charlie's school, it would be 1.30pm at the earliest and Charlie would be almost ready to take the bus home.

I watched the students file by and four other people exit from their seats but not because they had calls from the BAC.

The BAC called after, as stated, an hour: No need to pick Charlie up.

He made it home fine on the bus and he and Jim got up to six miles of a bike ride before soaking rain led them to turn around.

That must have unsettled Charlie a bit along with everything else and he went from over-the-top happy at dinner to impassioned crying.

He sat in the chair. Jim and my dad and I sat near by and my mother finished what she was doing in the kitchen and came to sit too. After a half-hour, Jim and Charlie and I went on a walk-run and his stomach was better and he ate up the bowl of shrimp in special sauce my mother had made, dipping in a piece of sushi to get the last tasty drop.

Charlie and I walked and ran again and he stood looking around him and at everyone and went to bed.

Party Success!

I'm sure Charlie threw the books on Saturday night in full-out anxiety about his birthday party on Sunday. It was a reminder of why, for some years, we skipped birthday parties for him, period.

We try to keep everything low-pressure for Charlie, in recognition of the fact that just the idea of the party, let alone the realities of guests and a table loaded with food, can weigh on him. We invited a number of our friends, all of whom have been very aware over the years of Charlie's struggles and sensitivities and would understand when we ducked out of a conversation.. Having my parents around was a huge huge help -- they picked up a big order of Chinese noodles and dim sum and, with four adults, someone always had an ear out for Charlie

He wanted a walk on waking, followed by a 12-mile bike ride. Coming home to a pan of shrimp lo mein and a pan of shrimp chow fun was an obvious treat and, while in the past I would have said 'wait for the guests!,' a birthday boy should get to eat his birthday noodles when he's ready (and hungry).

Our good friend Hal endured non-moving NJ Turnpike traffic on a drive up from Philadelphia. Charlie came running down the stairs when he arrived and ran smiling around the house. Hal had to head back home early but did see Charlie off with Jim and a friend, Ed, on bike ride #2.

Our other friends appeared and we had a nice little crowd on our back deck which is generally underused, Charlie having always preferred the front yard. (I'm probably in the back yard the most these days as I routinely cross it a few times to get the bikes from the yellow shed.)

Charlie spent a little time in his room after the second ride but was wary of so many voices at once (especially if you consider that it's rare for anyone but the three of us to be in our house). He and I went on a walk in the early evening during which we ran into our next-door neighbor and I noted that we were taking 'taking a break from our party'; she laughed in understanding. Then I took a smiling Charlie to get a burrito.

I had been sure to place his lunchboxes in the refrigerator so he would know that, party and all, he had school the next day. Charlie picked up his iPad and paced the L of the kitchen, dining room and living room. At first he had on Disney, then the Kinks ('Shangri-La'), then he started walking more briskly and running in spurts and his face started to get more set (i.e., frozen), and then he turned on the Pogues and his running got more intense and I went to find Jim to confer.

Jim stopped in mid-conversation to say he and Charlie would go on a bike ride.

So they did a total of 36 miles on Sunday, biking their good-byes to our guests -- all of whom we are thanking profusely for helping to make Charlie's 15th birthday a memorable, pretty much peaceful-easy feeling, and very good-feelinged, celebration.

And yes, after 36 miles of bike riding and 2 1/2 of walking, Charlie was ready to climb into bed at 10pm, and soon asleep.

 

2 + 4 Day With a Dash of Anxiety

Plans for a decidedly lowkey birthday party and Jim slipping into New York to celebrate a friend receiving a Master's degree in the evening were enough to instill enough anxiety in Charlie to gamely go on two long bikes (in Jersey horse country, where we indeed saw lots of horses) and request four walks throughout the day, all at his usual top speed pace.

An hour and a half before Jim came home, Charlie cleared the books off the piano and threw a box of Classics books.

Then he waited, tense, in the brown chair and the tenseness eased up, Jim came home, and Charlie ate a huge snack after not having eaten much since the morning (worrying, no doubt, about Jim's impending absence).

 

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.

 

Oxymoronic

With Charlie, it's so often a matter of completely opposite extremes all at once.

Thursday was a hyperenergy - fatigue kind of day. Up all night, walk at 5am, conking out in the brown chair in the hour before the bus came. Great day at school, happy bike ride (with my parents, for the first part), a little grocery shopping, a walk. Another walk. Tears and Charlie getting that pre-storm look on his face because, if he felt anything like I did last night, his head must have been feeling mighty fuzzy.

He stayed in his room after extra-elaborately arranging all of his items on the bed after removing them from their floor array. 

And he slept through the night and got ouf bed after the bus had pulled up (and kindly waited).

Barometer Boy

 

On a walk this morning at 5.15am, Charlie and I discovered that the humid weather of the past couple of days had subsided. A cool breeze blew on us and I made sure to open the windows when we returned.

That change in the weather, and the barometric pressure, was perhaps what had kept him up all through Wednesday night, along with (possibly) stomach discomfort. Wednesday hWeatad been one of those days when he woke at 5am and, after the usual day of school and a long bike ride and a run-walk, and a great deal of pacing and running in over-the-top excited mode with the iPad bellowing Jimi Hendrix, the Wiggles, the Pogues and some ska -- when, despite being in nearly constant motion, Charlie did not sleep. Through the wee hours of the night was in good spirits, assenting to lie on his bed and listen to some nature sounds -- waves, whale songs.

By 5am, he came down the stairs, ate a good bit of breakfast before the walk and then sat in the brown chair and fell asleep -- as of this typing, he has just under an hour of shut-eye before the bus comes.

Having finished my grades and almost all my job-related work for the school year, I am not back in the classroom till late August. I think will be sharing Charlie's 3-day sleep-waking cycle through the summer.