We Go With Him

The Storm Passed and the Sea Calmed

In the past, after a big storm, Charlie has woken up still stormy and we've slugged through the day(s) together until things calm -- sometimes it has taken a week, plus.

Sunday he slept in till 10am. We all went on a walk, draggily. Then he called for a bike ride, off he and Jim went, I dashed to the store, Jim texted me Charlie was teary. Then Jim said Charlie had called to go to the hamburger stand they pass on the ride -- which we once used to go to all the time when Charlie was younger -- so he and Jim had burgers 'n' fries on the metal counter amid a number of bikers (of the other kind of bikes). Charlie cheered up.

Was it a sort of conciliatory, nostalgia gesture?

He was tired but gradually cheerier throughout the day. He seemed on the verge of a nap in the afternoon then woke after I made another fast dash to the pharmacy (it's only 3 minutes away). He wanted his favorite burrito and we got him one and then, after a walk, he must have run down the stairs from his room to check that I had indeed put his lunchboxes, with the juices, in the shelf on the refrigerator a half-dozen times at least.

When I called this morning that I saw the bus, Charlie ran out (in mid-processing mode) and stationed himself on the sidewalk, looking ardently up the street and he ran as eagerly on.

 

How We Pass the Time

We are ever

 

in lovely motion, waiting

for Dad to come home

 

after waiting last night

past 10.30 pm

then keeping vigil all through the night

(maybe Charlie slept for 2 hours?)

anticipating

when the wait will be longer.

 

Post On Another Foster-Child of Silence and Slow Time

Friday was our last day in Athens, usually a day when I've written a sort of summing-up post about the trip and how Charlie fared. 

Indeed we were busy as we've been on this trip: 8am on the bus to be present at the 8.30am opening of the archaeological museum in Athens, Athenian agora (marketplace/city square), Acropolis, acropolis museum, souvenir shopping in the Plaka. As you may imagine, my students were rather on the tired side by the afternoon (also keeping in mind that, from a students' perspective on this sort of trip, 'activities' of various sorts continue into the night).

I had no problem walking around Athens and up the steep side of the Acropolis even on very minimal sleep, the result of computer trouble and one student's unfortunate discovery of a few too many insects in her hotel room. I matched my pace to that of our tour guide, Emilios, and we brought up the rear behind the students (themselves a bit dragging): I am quite spry (thanks to all those walks and sprints after Charlie), but certainly young no more.

Nightlife and 'hopping' about for potable items were never my sort of thing: I was the sort of college student---a Classics major--- who revelled in the quiet stillness of shelves of library books to clubs etc.. Preferring the safe, I never entertained the possibility of studying aboard in Italy or Greece. As Emilios led us through the museum of the American School of Classical Studies at Athens on Friday morning, I felt a little wistful, thinking that I once might have applied to study here and been like those serious young woman walking with a sort of air of familiarity around the ruins.

Emilios led us among the display cases to one in particular, where we saw this fascinating ceramic piece that has quite a bit more to tell than ye average Grecian urn.

Hint: Think Fisher-Price's baby product line. 

If you're stumped, the answer is here---it's an object I, as  a college student, would have cast just a glance or two upon, before hurrying over to the black figure pottery. But motherhood does something to a person. Knowing that another mother---a mother centuries upon centuries ago---did what she could to train her young child in the necessities of life: It's something I find reassuring; something that really gives me that feeling of having commadres (like my friend Emma, whom I shared a lovely conversation with in the hotel lobby on Friday evening) and connected all through experience and time.

At one moment yesterday evening as Emma and I were talking (at some points, about various escapades of our 20s), my students--we had heard them on the second floor by their hotel rooms and I think I heard someone say 'Dr. Chew's down there....'---came down the stairs single file and went out the front door for 'adventuring.'

I was very glad to be sitting at a table with an eye on my cell phone, lest Jim text about some concern.

I'm hoping I'll be sitting in the same place a year from now, talking once more to friends and mothers.

Two Charioteers

In sunny (and quite warm) Greece, looking at this status of a young charioteer cast centuries on centuries ago---the video is taken from his feet up to his head and you can see how he is turning his body in tune with the movement of his chariot and team of horses (which you must imagine)---

----the sight of this statue led me, inevitably, to think of another young rider.

After a most imperfect Sunday---not that we have never had such such before!--- Charlie had a fine day on Monday, at school and at home. It was a cold March day and in the afternoon, he went on a ride with Jim on his trusty black bike.

There was many a turn, and many a careful stop at the corners.

 

By Charlie Fisher

Here is Charlie's collage as inspired by Mondrian. 

It was displayed outside of the art teacher's room at Charlie's school, for all to see during parent-teacher conference evening. 

At the conference, we did talk about Charlie's may I say 'attachment' to the green shirt/brown pants and decided to encourage him more to wear different clothes after my trip to Greece.

Mostly we talked about art. I related that some of Charlie's first receptive language programs (back in the days of 40 hour/week Lovaas ABA) had been for colors and shapes; how he love, love, loved the construction paper squares (in an array of colors) and shapes his lead therapist made for him; how he learned to color and, for a time when he was 2 1/2 - 4, colored pictures in multiple colors with expert precision between the lines. And how, after that, his coloring and general inclination towards all pursuits artistic dwindled to indifference.

But then the art teacher brought out  those color squares on Wednesday.

I could have brought Charlie's colllage home last night, but (yes I have proud mother syndrome) I rather wanted as many people to see Charlie's work as possible.

Mondrian

 

We got the loveliest note from Charlie's art teacher today.

I repeat, from Charlie's art teacher---first time that has ever happened, Charlie's experiences with art having generally been more of the 'please just let me get through this activity with the smelly gooey stuff as fast as possible see I'm done!' sort. I do still have the first painting crafty sort of creation he made when he wasn't even two years old in daycare---in fact, that's it at the top of this post, orange marker on tinfoil covering cardboard.

Well of course I'm the sort of mother who thinks every scribble and scrawling her child makes is worth carrying around for over twelve years!

Though as I think of it, I'm rather amazed that Charlie's first-ever artwork is in quite intact shape. And, that I still know exactly where it is.

But you are wanting to know about this magnificent note. I'll quote a bit of it and paraphrase:

Charlie, the art teacher wrote, did a 'FABULOUS' job in art: They were making collages 'in the style of Mondrian'; the art teacher wrote that she was 'very impressed with how he chose and planned his squares.' 

On the one hand, I was not surprised: Charlie has had always had a thing for colors and shapes---these were among the first words he learned to understand. Indeed, he learned his colors because his first lead ABA therapist made laminated construction paper squares in different colors and oh did Charlie love those squares!  We kept them for years; one therapist used them to teach him to pedal his trike when he was 3. And Charlie definitely has a thing about order and has been creating arrangements like the one below with my shoes and other household items quite a bit of late.

On the other hand, it's something to hear that Charlie's ordering and arranging has led to the creation of an artwork. 

I am rather inclined to see his arrangements around our house little transient 'installations' in their own right. I do suspect that some would see me reading too much into a row of lined-up shoes (how autistic, right?); into OCD behavior.

But colored squares, colored shapes, arranged in some sort of what is recognizable as an aesthetic order---rather like the colored lines and bands in the paintings of Jessica Park---I am more than looking forward to seeing Charlie's collage, you can be sure.

I will indeed see it later today as it's parent-teacher conference time. I'll post a photo tomorrow.

I also have to say, it was extra-pleasing to get the art teacher's note as Wednesday was one of those days when Charlie awoke before 5am. Sometimes such an early wake-up portends a difficult day at school but Charlie's Wednesday was good. He changed into a yellow shirt (!) before we left home. He went swimming shortly after arriving at school and had a 'great day,' art class and all. He was mournful that Jim was gone all evening as Jim teaches a class on Wednesday night (and didn't end up getting home till past 1am due to more New Jersey Transit train-anigans). Charlie was asleep long before JIm came home; rightfully tired after a quite full day, he was out before 10pm.

It had been quite a day.

Echt Charlie

I suppose it's no surprise that we went to the beach on Sunday, as we've been going down there most weekends this winter. Perhaps in anticipation, Charlie woke up around 7.30am and was raring to go at 8am. We weren't and Charlie---swimsuit clad and boogie board loaded into the trunk of the white car---managed the wait well. 

We had a happy ride down and, fortified by fare from the Golden Arches, Charlie walked though some hilly dunes over ice, slush and sand, to the beach. 

 

The ocean was flat as a table (direct quote from Jim) and a magnificent blue. We ran into a few other beach walkers and 3 dogs (2 unleashed---these were very small and not interested in tall boys, fortunately). However, no one but Charlie was properly attired for the beach, in the swimsuit department. 

(The boogie board remained by the white car.)

I've written tons about Charlie's love of the ocean and how he seems more himself, freer, more "able," there. There's something about these trips to the beach in the winter that seems "echt Charlie." "Echt"  being German for "genuine," as in "the genuine article"---nothing fake or counterfeit here. It's not just that Charlie (and Jim and I) love the beach. But going to the beach in the winter in the "off season," because Charlie (and we) feel so very at home there, is kind of what life with Charlie (in Autismland) is all about. And Charlie puts even more of his own stamp on the experience by not huddling up in a parka and sheepskin-lined boots and heavy pants. He does wear the parka (over his fleece jacket, same as he does on walks at home) but he's wearing the exact same shoes and socks (in the sizes he's now fitting) as he does in the summer and, of course, his swimsuit. 

 

Yes, we have tried to have Charlie wear snowboots and galoshes. He's kept those on for a few minutes and then changed back into his black shoes. 

As for the swimsuit: I'm assuming Charlie's legs below the knee were kinda cold, but he was smiling away and apparently could have cared less. Just in case, I carried his long pants and a change of socks. 

 

Note to self: Bring a change of shoes next time, as Charlie went straight through an icy, sandy pool on the walk back through the dunes. He didn't seem to mind having to walk back in soaking wet sandy shoes. Suspecting that he'd just put them on over his dry socks, I made sure to place them in the trunk and Charlie was ok with that.

It's not so easy getting Charlie not to do things as he's always wont to. I always know he wants to stay at home and just hang out when he takes off his shoes and socks; he doesn't always take off his shoes when he's at home and that says to me, he still has some energy and inclination to go out. His need for order can get in the way his better interests---wouldn't have been too good for him to wear home cold, wet, sandy, soggy shoes. And so raising Charlie often means a dance between accommodating and adapting ourselves to suit his "order," and nudging him in the way of letting go a little.

Saturday night at our friends' house, I watched a film called "Breaking Boundaries: The Art of Alex Masket"; the filmmaker, Dennis Connors, was one of the guests at our friends'. (Jim didn't get to see the film: He kindly insisted that I watch it and took Charlie on a spin in the white car.) 

Alex uses stickers of letters and numbers, markers, Legos, duct tape, and other materials to make art, some of which you can see here. One gallery owner interviewed in the film noted that Alex's work has a kind of "visual music" and, I think, this phrase describes the vivid sense of pattern---created through colors and shapes---in his work. I met Alex's mother, Elaine Masket, a few years ago at a listening tour at the offices of Senator Robert Menendez and I can't say how much I admired how fervent advocacy, and her honesty about her worries about what is going to happen to Alex (who was just about to turn 21 at the time, and therefore to transition out of school). I didn't realize Alex is an artist; while Charlie remains not terribly inclined towards art, Alex's use of colors and shapes and his ordering of these on a flat surface reminds me very much of how Charlie seems to order his world.

 

Here, his blue bookbag and the little green notebook that his teacher and I write back and forth to each other in.

And as far as expressing who he is in ways other than verbally: What else is Charlie, swimsuited up, at the ocean on a late February afternoon?

 

Freaky or No?

Rita Marcolo, a dancer in the UK who has been epileptic since the age of 17, is planning a 24-hour performance which will include strobe lights and sleep deprivation. Prior to the performance, she has ceased to take her epilepsy medication. She received a grant of £13,889 from the Arts Council England for the performance. Notes the November Times Online:

Epilepsy charities said that the event turned a much misunderstood condition into a freak show and warned of the potentially severe dangers of coming off epilepsy drugs.

Marcalo said that she wanted to raise awareness of epilepsy as “an invisible disability” and would use next month’s adults-only show at Bradford Playhouse to explore “my ‘other’ identity as a disabled person”.

Marcalo, the artistic director of a Leeds-based dance theatre company, Instant Dissidence, has been epileptic since the age of 17. She stopped taking her anti-convulsant drugs last week and for 24 hours, from 1pm on December 11, a paying audience will watch her attempts to bring on a fit.

These will involve the use of strobe lights, fasting, sleep deprivation and specially designed computer programmes, plus raising her body temperature and taking brain stimulants including alcohol and tobacco.

Performances from other dance and installation artists will keep the viewers entertained as they wait.

The Playhouse says: “At any point in the event Marcalo might have an epileptic seizure. Whenever this happens, a loud alarm will sound, lights will brighten, music will stop and a series of cameras will start recording her seizure. Audience members will be encouraged to record it on their mobile phones.”

A neuropsychologist from the National Society for Epilepsy, Sallie Baxendale, comments that:

“The upside is that it gets people talking about epilepsy, but the downside is that it’s being presented as a freaky type of entertainment as opposed to teaching people about seizures.

“The danger of coming off medication is that sometimes when you go back to the same level as before your seizures are not controlled any more. You play about with your medication at your peril.”

From the Times Online article, it's not clear if medical personnel will be on hand during Marcolo's performance. One can't help but wonder if the dancer might be risking health too much in the service of art, with such a performance? Or is Marcolo's performance rather a novel way to increase understanding and awareness about epilepsy, about what it is to have a seizure?

As a parent of a child who seems prone to some sort of neurological activity that we can't seem to figure out, I'd say that we make it a point to avoid or at least think of how to ease Charlie through any situations that might cause said activity, and seek out environments that are more likely to be soothing and not over-stimulating. And, Charlie takes various medication some of which are anti-seizure meds, and you can be sure we make sure not to miss a dose.

What I'm wondering is, what's to be gained for public knowledge about epilepsy, to witness someone, it seems, deliberately creating the circumstances for herself to have a seizure? Are audience members allowed or expected to aid Marcolo should she require such? Is she making of herself a literal "freak show"?

Often enough, Charlie being Charlie gets attention---stares and uncomfortable glances---of an uncomfortable sort. Wanting to celebrate Charlie's good first week at his new school (Friday was good), we had gone to his favorite diner last night for an early dinner. Two couples, one quite elderly, were seated in his preferred booth. They all seemed to be ordering complete Early Bird Special dinners and Charlie eyed their food and them---smiling a lot---while waiting for his burger. (He also asked a few times to try my soup.) There were some perplexed, if not apprehensive looks, at Charlie's mannerisms and his speech and vocalizations. After he had finished eating and was pulling on his coat, there was a new round of stares and questions from two boys who were dining with their grandparents, and all the more when Charlie paused between the booths, put his head down, and paused.

Sometimes we say something; last night, we didn't. Charlie eats quite a bit at this diner and he wasn't doing anything particularly unusual or exciting. Any "freakishness" was in the eye of those looking.

And perhaps that's the mindset that might be useful in considering Marcolo's performance. Freakshowness is in the eye of the beholder?