We Go With Him

In the Guardian: On abortion and disability

It's practically a cliché for me to assert that life with Charlie is quite unlike anything I ever could have imagined before he was born almost 16 years ago and that life without Charlie is unimaginable. There's been quite a bit to do these past weeks with teaching my way through the end of the Roman Republic and Charlie's med change which has been (we think we see now) wound up with a spate of panic/anxiety attacks -- things got a bit extreme but there is our boy on Saturday with a freshly done haircut and shave -- so, almost a week after it was published, here is s a piece I wrote on abortion and disability in the Guardian.

A woman must have the right to have control over her body. Easily said by a college junior; believed with equal fervency by a woman whose diurnal rounds are very much directed by others (Charlie, obviously) and who's learned that, sometimes when your circumstances are not all free-and-easy-do-as-I-will-whenever--all-the-time, very good things can sprout.

 

Fable of the Still Broken Washing Machine

In the great scheme of things, us being in a state of washing-machine-less-ness for something over a month (the repairman came a week and a half ago only to discover that the most important part had not been sent though plenty of other big boxes with other parts had, leading me to make, a few days later, what was the probably the first-ever attempt to explain the Emperor Augustus' struggle, or failure, to find an heir he truly wanted via a comparison to one New Jersey classicist mother's attempts to get a major household appliance fixed) -- this is not a big deal. 

Though of course the county government would choose the upcoming week to close the street the laundromat and my favored local supermarket (where some of the clerks remember when I used to bring Charlie to shop, before the incident of the red brownie box, and still ask how's he doing) are on for major repairs.

Still recovering from last week's emotions and storms worrying and enduring Dadless Wednesdays and from staying up all night from Friday till Saturday morning, Charlie slept till nearly noon on Sunday. He called for a long local bike ride and Jim readily acceded. Usually I've been waiting till Charlie's back at school on Monday to head to the laundromat but I thought I'd venture over. While the mega-sized machine was starting rinse no. 2, Jim texted me that they had cut the ride short and were home and where was I?.

I was just leaving the bagel store. I'd found a certain worker -- who once held onto Charlie when he had a severe neurological storm as he and I were waiting in line; it was a tight space, redolent with smells and people and the worker jumped to help us as if on instinct -- wearily cleaning out the plastic display case that usuallly contains the crumb cakes and muffins. I paused as he seemed very busy then realized he was waiting for me to give him my bagel order. As he filled a bag with everythings and whole wheat everythings, I said thank you and then (I felt I had to say something), "you're closing soon?"

"In an hour. But the last hour is the longest."

"Yes," I said.

Another man who was chopping celery behind him laughed. The worker rang up my bagels and said over his shoulder, "If you were doing what I was doing [gesturing to the crumby plastic display case], you'd say so."

I thanked him again, he nodded, I hurried home, left Jim and Charlie delving into the bagels, and went back for the laundry. 

Afterwards Charlie and I did our five-plus mile walk under a bright blue sky and it was with the same that he and Jim rode off a bit later from the park in Bayonne by the bay and just beyond the Turnpike bridge. Charlie was smiling broadly, not only at the prospect of the ride and the sunshine and the Vietnamese food we always get him afterwards. On the ride in, he'd been in the grip of his anxieties: We pass the airport on the way and he couldn't stop insisting we go there and get my mom and dad. They're due to come in a month and, it seems, Charlie has started with his usual pre-Gong Gong Po Po visit anxiety.

Leaving me thinking, maybe it'd be best not to drive with him by the airport more than necessary, for the nonce. And that, while's it's often noted that those on the spectrum struggle with executive functioning, Charlie has a very well-developed capacity in this area: He's already planning both driving routes and his anticipated emotions quite a bit of time ahead of my parents' visit.

Working his way successfully through so many feelings gave Charlie a boost, I sould say. It was a great ride in Bayonne and Jersey City, even with a surprise ending.

Jim and Charlie like to meet me in Liberty State Park, against the backdrop of lower Manhattan and the rising Freedom Tower. I was waiting there but a police loudspeaker blared out that The Park Was Closed As In Right Now. A nearby parking lot for the light rail station was blocked off (by police cars with flashing lights) so I waited for Jim and Charlie on a side street. Charlie grinned as he rode up behind Jim.

Sometimes the unexpected can be a bit easier for Charlie to navigate through. Perhaps because, he doesn't have to worry about pacing himself through that last longest hour, waiting for things to be fixed and set right and orderly again.

 

Quae Cum Ita Sint

 

I am happy to report that the 20-mile-plus (bikes and those long walks) days we did this past weekend resulted in a sufficiently exercised boy going to sleep at decent (pre-1am) times on both Saturday and Sunday and waking just around 7am (early for Sunday, but regulation if your preference is to live every day similar to the next; just right for Monday to catch the school bus which was on time but had to be redirected by Jim because the digging-up of our street is now in another direction).

Also that I am not minding not having a washing machine, ours being still broken (the repairperson is to appear later this week). Only doing the occasional wash, after you have carried a good helping of clothes into the back seat of the car plus detergent and checked you have a fair supply of quarters, means a nice freedom from the tyranny of the Machine in the Basement and the Need to Wash and Dry Constantly. 

Plus, in a sweet bonus, I realized that the ringleted girl on the TV screen above the triple-load washer I was loading many pairs of pants into was none other than Lyra in Philip Pullman's The Golden Compass, the His Dark Materials trilogy being much preferred by me over Harry Potter. Since I had to stick 14 quarters into the slot, I got a good watch before heading out for groceries, fresh bagels and blogging about bird flu.

I would like to say that the re-institution of the long walks has meant that Charlie is sleeping better or at least rather routinely. Things being as they are -- quae cum ita sint -- Charlie has had some good sleeps, intermixed with his now-routine insomnia (occasionally of a manic sort) that seems very much correlated with the nights before I teach.

I do like that we are sensitive to each other's routines.

Two Good Points Worthy of Note

 

Good thing I suggested to Jim to forego going to the gym Friday morning. He and Charlie had clocked in twelve miles on their bikes the night before and then, while not sleeping till about 4am on Thursday morning, a clearly tired Charlie was in manic-mode and took us on an evening five mile jaunt at a race-walk -- running -- pace. (The route is more than five miles and we did it in just around an hour.)

Also very good that I've been running daily for the past thirty years, from the time I was on the cross country team. After Friday's twelve mile bike ride and at the very end of another night time (the 'curious incident in the night time' business rings often in my thoughts) five miler at a nice pace, Charlie went full throttle sprinting up our street, right fit behind, somewhat. Perhaps my rather ruthlessly healthy diet (meatlessly Mediterraneanish and very heavy on the fresh produce though also heavy on the black coffee; vices are human, and important!) comes in handy, too, in keeping up with the times of our boy.

 

I Don't Do Burgers

Charlie has been asking rather a lot to go to various (well, 2) places to get burgers. This happened Tuesday (when it was raining; the bike ride photo was taken on Monday) and Wednesday night, the latter being last night and one in which we were waiting out the time for Jim who was teaching his evening class. Charlie's been going through some medicine adjustments one of which has an appetite-increasing side effect. He is also, as often noted, prone to OCD-ness and repeatedly asking to go out to places has long been something he's done resulting in him and me doing those car trips, two walks and a finale ride to the train station an hour before Jim was to come, the last half-hour of which (getting down to the wire here) Charlie has a panic/anxiety attack that he managed to get under control.

After he was back in his seat, we called Jim on the phone and that helped so long as Jim stayed on the phone but then -- phones, disembodied voices are still very confusing for Charlie -- the 'flight' part of his 'fight or flight' tendency came out and he tried to get out of the car so, under-coated as we were, we went to pace a freezing cold train station with small gather of the restaurant workers (who had more of a coat then Charlie) and then the train came, Jim stepped off, Charlie smiled.

But regarding the burgers. It's occurred to me the reason Charlie wants to go out is that I'm a terrible burger-maker. Mine always end up burnt, chewy or gooey -- what you'd expect from someone who's been a vegetarian for three decades! 

Charlie knows how to work around my limitations.

Yet Another Post On (Mis/Missed)Communication

On Wedesday night I noted but didn't act quickly enough regarding the (in hindsight) obvious signs of distress Charlie was sending out: asking for Jim (who was working till late) as soon as he heard mention of him at 6pm; repeated request for McDonalds as soon as he had eaten his dinner; insistent consumption of a bowl of blueberries and a small bunch of grapes; stares with a certain glassy eye-ness. We keep some medication on hand when something extreme can happen but I gave it to Charlie too late -- his heart rate must have been soaring -- and had to ask my mother to call 911.

As it is the end of January, we are just a bit it into the spring semester and it was at precisely this point in time that, last fall, Charlie went similarly into crisis around 4-something pm on a Wednesday afternoon and I called 911.

Charlie stayed seated in a corner of the blue couch for all but a few intense moments this time and one policeman came in and was calming and another waited outside. Again, they didn't have the lights of their car on. The medication got into Charlie's system and he was calming well when they left and remained so for the rest of the evening.

He has had a string of good days at school; on Wednesday, Charlie had gotten off the bus smiling. He has been enjoying my parents' visit (and it also should have occurred to me that, Wednesday being a few days before their departure, he would be nervous). There was definitely a stomach issue on Wednesday and I was preemptive but not with (obviously) everything.

Parental lag, it was, and a potent reminder that, even when there are words, misunderstanding (and not only in the case of Charlie!) can ever still occur.

 

Friday the 14th of December

I taught my last class of fall semester 2012 on a big wave of emotions. I'd been thinking a lot about Charlie going off to school -- getting on the bus after I left for my early Friday morning Elementary Latin class -- because as I was ascending the curving on-ramp onto the Pulaski Skyway and hearing the Decemberists launch into the mariner's revenge song I remembered, amid giving Charlie various things for sinus congestion and stomach discomfort and concluding that I have whatever he has, I had forgotten to give him his daily meds.

Happily, I immediately contacted Jim at the gym and he hastened home to get the meds and thence to the Big Autism Center to give them to Charlie.

When some students expressed less-than-thrilledness about the essay question format of an exam I emphasized the importance of ye most basic written-by-hand-on-paper-communication by talking about how I rely on a black-and-white notebook that Charlie's teacher, therapists and I write back and forth in. If his teacher isn't there, anyone can read it whereas an email to his teacher would only go to the teacher's account and it's not that the school classroom staff can just check emails when they have kids to teach and care for. Of course, Charlie's teacher and therapists arent's writing essays on Herodotus and Thucydides but I know from daily writing, writing and writing that the more you do it, the better and more fluid it comes.

Our children and those to whom we entrust them every day to learn, how beyond important they are and all the more so on this day.

Mother Guilt Attack

I'll always wish I hadn't thrown his Barney away. When Charlie was 7, it felt that it had to be, because of head-banging occurring along with bouts of purple dinosaur play and videos.

It was probably better ultimately to say good-bye.

But having mother guilt is all part of our odyssey, I think.

Teaching is all about the spontaneity

 

As the above photo attests, it was a good day in my classroom even though we had no AV. I didn't realize the previously broken LED projector had been fixed but I'm glad I didn't. It's most likely not that apparent from the marker mess in the photo but I had one of those ήυρηκα! (eureka) moments when I came up, on the spot!, with an idea to graphically explain the archaeological strata (layers) at the site of Troy.

At 1.30am Tuesday night (i.e., Wednesday morning), I turned off Charlie's iPad after he had thrown a box (found in a closet) of videotapes and notebooks down the stairs. He had put it in his room a few days ago and the throw was one of those furious impulses on his second insomniac night in a row as he had gone to sleep after 3am on Monday night (i.e., Tuesday morning). He had a great day at school Tuesday and managed well with walks and no bike ride on a dripping, soggy gray day.

Technology can be perilous, or at least distracting. Colored markers rule.

 

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Present Tense and Presence

It's looking like this will be the third all-nighter of the week as Charlie napped in the brown chair for just over an hour in the early evening. Jim is usually home on Fridays; there were things that needed his attention though at work and then his presence was additionally requested at an evening event. It all worked out fine with Charlie cheerily waiting on the front lawn and a lights-on bike ride but, at the risk of playing the complainer, I reflected that people still don't fully grasp the extent to which Jim is a primary caregiver for a teenager with severe disabilities and his presence is not merely required, but essential on the home front. Next Tuesday Jim has to go into work for an event in the early evening and we wondered if there might have been more of an effort to schedule this earlier if he were a mother citing child care needs.

For Charlie, there's no such thing as virtual reality. He used to pore over photos of people when he was little but this happens rarely now. He did such perusing a few times last week and it seemed to leave him unsettled: The photos were of a far younger Charlie with far younger parents and grandparents and, while he grinned looking at him, he was tensed and hyper afterwards. Just too much, times and memories and faces and thoughts colliding.

For that reason, I questioned a long-time habit of emphasizing my parents 'will be back' as their visit ends. The expression brought that tense frisson to Charlie's demeanor, as if he wasn't exactly looking forward to going through all the anxiety of anticipating another visit again. One visit at a time (i.e., the present one) is enough to contemplate.

Charlie also of course relies deeply on our actual presences. Many people have mentioned Skype as a way for him to communicate with relatives in California or with me if I, say, went across the Atlantic ocean. But we noted years ago that Charlie was troubled to talk on the phone, to hear familiar voices, disembodied and emerging from a device. He likes us around not just to talk to him but for a hundred thousand other reasons. That means travel has become in my mind's eye solely -- not complaining about this at all; I would rather stay within a small circumference of places and close by Charlie if it keeps up a good peaceful-easy-feelingness.

And it is good to know Charlie would not consider talking heads as any sort of substitute!

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