We Go With Him

On Being Accommodating

 

Accommodations. A very important word in regard to Charlie's education. A term that tends to be a harbinger of legalese as in 'time to invoke the spirit and the letter of the IDEA and the ADA.'

Such is all-important and necessary in molding a way through the world in which Charlie can not merely function, but thrive.

But accommodating takes far humbler forms: My deciding this semester to work at home an extra weekday. The day is Monday and the decision came in most handy as Charlie went to sleep at 9pm on Sunday, woke at half-past midnight and stayed up for the next 22 hours. Inbetween, we did a couple of walks (one at 6am), made coffee (well, I did), visited the doctor after school for the recurring rash on Charlie's face, rode bikes (Jim and Charlie, that is).

Two nights of deep sleeping followed, necessary from a sleep perspective but portending unsettlement in Charlie. Indeed Tuesday and Wednesday were not as peaceful days at school as the sleepy Monday had been.

There have been barometric circumstances that have brought warmer temperatures and, Wednesday morning, an onslaught of rain that meant, after a 6.30am walk, Charlie needed a complete change of clothes and dry socks (he accommodated; in the past, once he had put on the day's clothes, they could not be removed from his body till the evening).

There has also been a pearly full moon.

There has been the now-inevitable build-up to the long Wednesday afternoon and evening when Jim teaches late.

But as of this week, Jim decided to teach his class straight through without a break in the middle. It meant he could take a train from NYC an hour earlier and so, bingo, he appeared on the train platform at 9.25pm to a smiling Charlie.

Last week, when Jim was not due to appear on the platform till 10.25pm, Charlie was fine till 9.30pm and then at 9.50 his agitation broke loose. One hour less of waiting made all the difference.

It is my thought that Charlie knew this throughout the whole day. As he went out the door to the white car so we could meet Jim, Charlie gave me a little glance and said 'good boy.'

 

In the Guardian

My piece, 'Do we really need a cure for autism?, was published last Friday, 22 February 2013, in the Guardian. It was a very huge honor to say the least. I've had the issues of 'cure' and 'recovery' on my mind since Charlie was diagnosed in July of 1997 or rather before, from the time (around the time he was 18 months old or maybe even 10 months old) that we knew something was not right.

I have to say, I'm thrice and four times grateful for all the dialogue with all of you (here when this blog was called 'My Son Has Autism' and then 'Autismland,' on dear old Autism Vox, Change.org, Care2.com); these exchanges informed my Guardian piece. I've tons more to say on the 'cure' issue -- on the 'mystique of cure' -- in regard not only to autism (which is not a mental health issue) but other things (including mental health issues).

Thank you and thanks to, of course, Charlie for everything and Jim for everything plus plus, plus.

 

(How to spend a Saturday of straight rain.)

The Usual Usual

 

A few snow flurries were falling, but it was the usual scene on a Friday afternoon (after a good and full week of school and such) here.

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.

A Big Wind Clears the Sky

 

That's a view of the Meadowlands from the NJ Turnpike going south, around noon on a morning when the wind was so strong Jim and Charlie did a shortcut local ride.

The Meadowlands, despite their name, have the reputation of being industrial Jersey wasteland. That is the case but we (Charlie too by his serious looks out the window) like the vistas, of brown reeds, river waters, iron and steel structures, highways criscrossing each other, Manhattan glittering in Oz fashion to the east, Newark stolidly sitting westward, streams of smoke from a smokestack, always cars.

We've stayed local the whole long weekend. Charlie conked out and could not be woken Friday and Saturday afternoons and slept not at all in the nights. Sunday morning he lay down for a few hours on the blue couch, waking at 11 and immediately calling for his bike.

After a chilly post-dinner walk, Charlie had a disturbance, if I may call it that, reminding me of his distress on a previous night. He ended up back on the couch and as we've discovered, as of Saturday night, that he seems cheered to hear my parents' voices on the phone (after years of pushing it away, as if hearing voices without bodies was too much to deal with), I turned on FaceTime on the iPad and gave my arm a good ache holding the device at Charlie's eye level, so he could see my parents and they him.

Then he went to sleep on the couch, woke after two hours and went up to bed, turned on music from Wiggles to Pixies, fell back asleep before 11pm and the house creaked and settled in the wind.

Four Day Weekend (Less One Day)

 

Charlie has a four-day weekend due to Presidents Day on Monday, a bit of a double disruption as it means one school week is cut short at the end and at the start. Jim brought him to me mid-morning Friday in Jersey City and then went to take care of some business; Charlie and I enjoyed a ride through the Meadowlands, New York on one side and Giants stadium on the other, for a favorite burrito. In the afternoon, he had his first-in-while bike ride with no stops to walk.

Around midnight, unable so sleep (he'd dozed in the afternoon), he was undone, as in agitated, from eating some Chinese noodles -- the bulk of beans and rice suits his stomach but not the grease and soy -- and went for the wall, fiercely, then got himself to sit on the blue couch.

You're probably asking yourself, why do they keep getting those noodles if they bother his stomach? I ask myself that, too. There are always probably other factors (like yet another an oncoming storm, the aforementioned long weekend) behind his thymic distress. Charlie is very obsessive and ritualistic about food and it does seem to help to address these by letting him have what's he's asking for, seeking to moderate it and buttressing his GI system with plenty of fluids and other things (apples and fresh fruit seem to help some).

Charlie and Jim are out bike riding again this Saturday morning because that's what we do.

A Short and Sweet One

After starting his Wednesday shortly after midnight, Charlie got up for the bus at 7.15 am (after a 6.30am walk) and was asleep when it arrived. He had a good day (it's been that kind of week). We walked twice and, after getting a burrito from his favored place, we enjoyed a grand view of the Manhattan skyland from the Meadowlands. We walked twice more and, shortly after start a round of calling for Dad! Dad!, he fell asleep on the blue couch, no melatonin required.

The photo is from a weekend beach trip that led to Charlie's first 17 mile bike ride in a while and after a tough moment, and I'm glad I saved it to post on Valentine's Day.

The Report From Here and Very Faraway

 

Charlie's been up since just around 1am so I read about Mali as he listened to the Pixies, paced and ate a very early breakfast. We went for a walk at 6.30am.

 

After the Storm and Into the Wind

 

The title has a metaphorical as well as a literal application, Charlie having had an 'attack' with throwing of multiple plastic items, hitting his head and grabbing my arm and containing it to that and then biking 17 miles with occasional coaxings from Jim, into a 5 mph wind.

He had woken calling for a certain Chinese restaurant that is laden with grandparents associations x 4. The food there is better than average but still greasy and, along with emotional matters, it's a bit much for Charlie to stomach (also meant literally and metaphorically).

Jim said Charlie pedaled without stopping in the sunshine and just traces of snow.

Snow Walks

Did 5 of the above yesterday, post-Nemo. Also a lot of driving around and rather a lot of sleeping and eating (what you're supposed to on a snowy day, that is.)