We Go With Him

Swings and Carnivals and Summer Things

 

Charlie just polished off a rather large post-midnight snack about an hour and a half ago. He napped earlier in the day after a walk -- first since Tuesday I think -- and a big lunch. He had eaten nothing but apples, watermelon and crackers for about three days so I'd say the return of his appetite is a sign that he is on the mend.

He still spent a fair amount of time after waking up and before going to bed doing the Extreme Stimming, though it seemed a shade less extreme. Our new theory -- Jim and I are ever on the detective trail -- is that it may have something to with his ears being clogged (wax... I'm not inclined to poke too much in his ears lest Charlie start to do so too much himself), plus we had to wonder if seven days of swimming at camp had taken their toll. I managed to get a few ear drops into Charlie's ears; perhaps his head and neck twists and breathy sounds are an attempt to deal with odd, ringing, or some such sensations in his ears?

Daily mysteries, these are.

The wind was picking up here (a little taste of the hurricane that's brewing far to our south?) but Charlie and Jim got in one last turn on the ferris wheel, after which Charlie zoomed through the air on his beloved swing ride. The carnival closes Saturday night and Sunday night Jim has to go into NYC for a departmental function so it was our last night, regardless.

It was good together fun. Charlie smiled throughout the entire ferris wheel ride and waved every time he and Jim caught sight of me -- am a chicken about rides; even a merry-go-round makes me panic. Charlie's love of motion haileth not from his mother.

 

Fight the Power (#FreePussyRiot, Take 2)

Advocacy. It's all about fighting the power, to me.

Or, fighting the orthodoxy and authoritarianism, as the case may be.

Or the hypocrisy -- the treacly 'we just want to do the best for him' pronouncements of school administrators have always, to Jim and to me, required deconstruction via sustained, feisty, argument.

Though too, I've also worked to fight the illusions and errors of my own thinking, such as my long-time criticism of the Big Autism Center until (talk about getting smacked up the side of your face by your own pride) it became the only option for Charlie and then one that he clearly liked and then one that we've all come to love. I dislike dishonesty and, especially after realizing how wrong I had been about the BAC, seek to wrestle my thinking, and actions, into full honesty. So of course I couldn't deal with belly dancing which while a cultural practice in some societies, smacks too much of the sexual objectification of women's bodies to me.

But if it had been belly dancing as ironic feminist praxis........

Feminist praxis and autism, autism advocacy, autism motherhood?

Now these are topics, unlike the dead horse of the vaccine issue, that have yet to be touched.

Charlie had his last day of camp Friday (kept it short as, after swimming, he pushed away at the counselors during a camp-wide party with a DJ and loud music) and returns to school in two and a half weeks, the day after the day after Labor Day. There will be at least two full mom 'n' Charlie (bikeless) days, one coming up next Tuesday. Since bike riding (like today's 12 mile Jersey City to Bayonne ride) comprises about 60 or 70% of not-in-school time for Charlie, there may be many moments ahead to mull over, or rather to see put into action, the above topics.

Feminism and mothering children with disabilities?

How do you as a woman assert your right to equal treatment, to equality, when you have no choice but to devote the lion's share of your time to that most traditional role of women, child-rearing?

I may never write more about any of this but I'm loving formulating these questions.

 

#FreePussyRiot

Were I 20 years younger, I would be taking the train into NYC today to be at this.

20 years ago it was 1992 and I was contemplating my third year of graduate school and taking my oral exams, I didn't know Jim (wish I did as that would have made grad school much better). Amazing that just five years later, Charlie was born.

To be honest, I don't think my 23-year-old self would have had the gumption to don a balaclava and protest on behalf of imprisoned feminist punk rockers. I had all these voices in my head telling me ever to do the good girl thing and not be too adventurous or express strong political and other opinions as I had attempted at the age of 12 when I wore a pin proclaiming 'Never Underestimate the Power of a Woman' I'd gotten at the school carnival.

Various experiences, some related here, have changed that.

Experiences including praising your boy for vomiting perfectly into the plastic bag you're holding (Jim drove and opened a window as I asked) and scrubbing out the car under moonlight.

The sixth day of camp was great, with Charlie smiling an especial lot in the pool, liking music and dozing during art. After a rest at home Jim drove us (in commute traffic) out to Jersey horse country.

They did the usual 16 miles and it was dark in the woods when they finished.

We figure the antibiotic, the fast bike ride in cooler temperatures, eating a burrito too fast in the car, 'who knows what,' contributed to Charlie being nauseous. He is better but sleepless at 2am -- maybe transition butterflies as it's down to the last day of camp?

Mayhap I'll be up to catch the verdict of the trial when it's announced.

 

Super Summer Day

 

Summer is not over yet and you never know what can happen but Wednesday the 15th of August was probably one of the best of our summer. (Yeh, watch the 16th morph into something memorable in a different way, ha.)

Charlie woke at 5am, we all walked at 7am, he dozed in the brown chair, we drove to camp and he cried a litte after first being dropped off then smiled and laughed and was discovered sitting at an assembly about fire safety with an earnest fireman braying (very good-heartedly) through a megaphone.

Late lunch, home, rest, drive to Liberty State Park and he and Jim were gone over two hours as they spent half an hour under a pavilion with two groups of two teenage boys as there was thunder and lightning and sheets of rain.

It was an hour 15 mile ride (all the way to Bayonne) with a view of the Bayonne Bridge Newark Bay NJ Turnpike Bridge and, declared Jim, among their all time top ten rides and consequently Charlie was smilingly content to stretch out in his room for the rest of the evening until going to sleep by 11 pm.

 

Straight From Somewhere in New Jersey

Trooper that he is, Charlie got up to get in the white car on Tuesday and made it through the morning at camp, a rainfall notwithstanding (they still swam). After a here and there drive through New Jersey in pursuit of a shorter, more direct route home -- reminiscent of days gone by when we did lots of here and there drives in New Jersey -- Charlie went straight to bed and slept for 5 or 6 hours. He was very hungry on waking and we went to that faithful standby, the drive-thru line at McDonalds. He cracked a smile around 9.30 pm-ish, watched me cut up a watermelon, and was back asleep by midnight to the sound of ocean waves.

The day did have a feeling reminiscent of our beach house vacations of yore which would have been just around this very time of year.

 

We Make Up the Map As We Go

August allergies and the return of the nasty skin infection on his left cheek meant Charlie downed a fuller panoply than usual of pills (antibiotic, nurse-recommended acidophilus to counter antibiotic-induced stomach havoc, Advil which might bother Charlie's stomach but he's got quite a mess on his face and forehead from last week's close encounters of an auto kind so a parent must weigh evils) and spent almost two or maybe three hours in the evening standing in his room after a shower making breathy, raspy noises. Jim read the news and baseball scores after a slow, weepy boy bike ride and I read the Iliad and then, after 9pm, we made a grocery store run and it was like the late-night convenience and drugstore runs we used to do when we rented a beach house because it's the shore and it's vacation and everything is open late and everyone is out in flip flops.

Though Charlie did doze off during art, he had a great day at camp.

 

The Hours We Keep

I'm happy to say that, on the camp front, day 2 was great, even though it was raining (down pouring) the whole 3 hours Charlie was there. There was no swimming and a lot of time spent in a covered area with tables; due to the circumstances, they assigned Charlie a 1:1 aide. He smiled when we dropped him off and didn't run quite so fast to the white car at 1.30pm.

We had only dropped him off at half past ten as Charlie woke after 9am, on the blue couch, where he'd fallen asleep around 5am to the sound of ocean waves.

He slept from 3-6 pm after we returned from camp, waking ready for a bike ride and wanting, after a day's hiatus, a walk.

We heard the Pogues at midnight. Then a round of older Disney tunes after a little Charlie Brown jazz music. And then, a dash of a real old Charlie favorite, jazz violinist Sugarcane Harris. Then, the reliable Kinks. And then, Jimi Hendrix.

Yes, a good dose of rock 'n' roll and edgy sounds as would suit any teenage male in the dark hours of the night.

(Charlie doesn't like to wear headphones so what he hears on his iPad, our household hears.)

Apparently the siesta, that 2-5 pm period for a meal and a snooze, is on the wane in Spain. We do seem to be keeping up the practice of a midday break with a late (late) bedtime here.

 

Aftermath or, After Getting All That Out

Perhaps someday we might rock the transitions rather than have rocky ones.

Charlie slept through the night Tuesday, after a series of nights of disordered sleep and no sleep. He got up for the bus and was still very tired at school, sleeping quite a bit there too but in a good mood. It took a few tries -- obviously Jim had reason not to notice things like nmes of streets while hanging onto a behavior storming Charlie -- but we located the scene of Tuesday's incident and spoke to the cars' owners (yes, it was two cars).

Jim really wanted to get Charlie to ride in a different direction and do the 12-miler but Charlie would not.

The ride went well.

In fact, after dinner, they went on another one, something they haven't done in awhile.

That meant they got in 12 miles.

Charlie did some hyper running and turned on the Pogues but at 10pm not midnight. He had the picture of the school bus on his iPad and I asked if he'd liked to see camp and he said 'camp' so I changed it. Gripping the iPad, he walked off, serious. Within an hour, he was asleep and again through the night.

It Ended With a Dance Party

'

No camp' was the word from Charlie on Friday morning; he instead asked to go out to Jersey horse country and cast us his woebegone look. I made him some breakfast -- apples and oatmeal -- and he didn't eat much but he kept it down.

We explained, he could go to camp for a little while as it was the last day and say his good-byes and then we could ride bikes.

'Ride bikes,' said Charlie. We loaded up the bikes and helmets plus Charlie's bags for camp and were off. Charlie did not object to being dropped off and Jim and I went straight to the country library where, being us (yeah, two professors), we spent too many minutes trying to figure out how to put the bike lock my aunt had sent us on the bikes before going inside.

Charlie's counselor called at 12.35 pm to say he was having a great time at the dance party doing 'YMCA.' We went to get him and he bounded out as two other counselors told me he'd also had a fine time doing the cha-cha slide; I speculated that Charlie must have done 'YMCA' at music class at school or elsewhere (nope, not at home). We thanked the camp staff profusely.

Then -- how else to celebrate? -- Jim drove here and there and we came to the far end of the bike trail he and Charlie like to ride on. Off they went, Charlie querulous at first but nothing that 16 miles abide could not help him to cycle through.

Good thing they went so far as later in the evening it poured torrentially. Charlie and Jim were actually hankering for another bike ride but there's certainly tomorrow. Camp, though, as we told Charlie won't be till next year. I can't say if he's looking forward to it but we're certainly glad he's had his first try at it this week, and it's been good.

Under the Weather, and Telling Us In So Many Words and Ways

A 2am wake-up on Thursday, unpacking the bag with his swimsuit and towel, some strong no's at the mention of 'camp': Via all these, Charlie was trying to tell us that he wasn't' up to camp on Thursday. We kept him home, a decision proved fortuitous when Charlie had a severe bout of nausea in our kitchen and his crying at camp on Wednesday was explained. I suspect the swimming pool is the culprit as Charlie tends inevitably to get some water into his system and to suffer from the results.

Queasy stomach or not, Charlie was still up to riding his bike, though he did request a shorter ride than usual on the bike trail. (His slightly glum expression in the photo above attests to his not feeling 100 %.)

By Thursday evening (post-nausea event in the kitchen) he was smiling and lively as usual though still saying 'no' about camp. I suppose he might be associating it with his queasy stomach, alas? We'd like him to say good-bye on Friday as that's the last day the camp is open. We'll see what Charlie communicates to us Friday morning.

Frankly, I'm pretty pleased that Charlie, in the ways he could, let us know he was under the weather.