We Go With Him

51. The Helmet

Wed, 16 Sep 2009 01:01:04 -0400

This is the helmet that Charlie has been wearing at school since February. Charlie is currently in a self-contained autism classroom in our New Jersey town’s 1400-student public middle school; it is a town that is ranked highly in such national publications. The school district requested that he wear a helmet to “decrease head-banging, tantrum behavior, and aggressive behavior.” The helmet was to be worn “for Charlie’s safety” from the time he got up to the time he went to bed “with the exception of showering.” A plan was discussed to remove “pieces of the helmet”.

A sea of feelings was roiling in Jim and me when we assented to the helmet. At that time, things were very difficult.

It was communicated that the helmet was part of a plan to, indeed, “decrease” said “behaviors.” A number of Incident Reports had been sent to us in early and mid June; in the final days of Charlie’s 6th grade year. As I wrote in July, it was indicated by the school district that Charlie needed to be educated in a placement other than the public schools. Back in October (of 2008), it had been communicated to us that we should consider a “temporary residential placement” (at Bancroft) for Charlie.

(I think you know what we said about that.)

Charlie has not worn the helmet at home since early July. Jim and I made Charlie not wearing the helmet a top priority of our summer, of “Camp Charlie.” By August, Charlie had become a peaceful-easy feeling boy who had a most excellent beach vacation and who has remained, well, a happy camper, whether at home, in grocery stores, in New York, in Hudson County, at the neurologist’s and neuropsychologist’s office in south Jersey, at the dentist, at the barber, the fancy-schmanzy mall, in the nursing home to see Jim’s mother. He’s been doing, as noted in many a post of late, great, and been learning some new things, particularly typing.

He’s still wearing the helmet full-time at school.

As you may imagine, there are some pretty interesting and, too, delicate issues here. Jim and I have been doing what needs to be done. I will leave it at that: Some would say I shouldn’t be blogging about these matters at all. I have mentioned We Go With Him to our school district: Should anyone from our school district be reading this, greetings.

Jim and I have navigated this sort of situation before, with another New Jersey school district. Numerous issues arose concerning Charlie’s placement and, from December 2005-June 2006, Charlie attended a small, private autism school. We moved into this town in June 2006 so that Charlie could attend its in-district autism program which came quite highly touted. The program uses Applied Behavior Analysis (ABA) and is overseen by a behavior consultant who teaches at a New Jersey college that offers a Masters and other degrees in ABA, and that has started the “first Ph.D. program in the state of New Jersey” for ABA. A number of the teachers, therapists, and other staff in the classrooms with autistic students (including Charlie’s) are or have been students in this program.
I’ve written a bit about the need for public school autism programs, so that all children on the autism spectrum can have access to an appropriate education. Charlie’s and our experiences, which I’ve been writing about online since June of 2005, have made it quite clear that there is much we all need to learn regarding such programs.

But anyways. We’re walking the walk with Charlie, and very glad to be together.

We go with him.

autism Asperger’s children mother parenting

50. With Apologies to Charlie Dickens

Tue, 15 Sep 2009 00:59:25 -0400

This is my bag, full-loaded for work with books, laptop, dry erase markers in five different colors (the better to indicate the details of Latin declensions and conjugations), notes and files and quizzes (corrected and yet to be corrected), a notepad, etc., etc., etc.. It’s a bit of a load and so, when Charlie and I went grocery shopping Monday afternoon, I just took out some essentials and off we drove. After easily making our way through the aisles (Charlie handling a basket with a mongo slice of watermelon and me with various items in our reusable “green grocery shopping” bags), I made the unfortunate discovery that I had forgotten to bring my ATM card.

I asked the clerk if we could go home and get it; she wasn’t (understandably) too happy, but a quick consultation with a supervisor revealed that Charlie and I could go home, get the card, and be rung right up when we returned. We proceeded to do so and, within 15 minutes, were walking across the parking lot (no stopping this time) with our bags. Charlie reached for his Sprite/”green drink” and we headed back home.

Nothing much to report.

Something huge to report: Soon as I realized I was without my ATM card, I thought: “Will Charlie understand that he has to walk out of the store without the soda and the food he’s starving to eat, go all the way home, go back to the store, repark the car, and go back in and wait till I talk to the supervisor and pay?” Just a few months ago I would have been beg-bargaining with the supervisor and scraping my coin purse to at least buy the soda to placate Charlie-on-the-edge-seeing-desirable-foodstuffs-and-having-to-wait-eat-them, not to mention some extra transitions getting back into the car, going back home and then going back again to the store.

Monday I said to Charlie “I forgot my money!” Charlie repeated what I said. A shadow of concerned passed over his face; then he grinned and laughed a bit. I was mindful of one of lesson Jim and I have learned about maintaining the peaceful-easy-feelingness: Charlie being super-over-sensitive when others experience and express frustration, anger, conflict, worry, fear, it helps him (and everyone) tremendously to weigh “how important is it?” against the possible reaction he might have. (A reaction that would take much effort on our part to undo.) We’ve been realizing that Charlie often thinks that he might be the cause of any agitation that Jim and I express. I am starting to explain to him that we sometimes get agitated etc. because for plenty of other reasons (rude drivers, “issues” from work, forgotten ATM cards, piles o’ bills that just seem to get replenished, being really tired). But by no means is he always or even often the reason.

I can see how Charlie well might think he’s the reason for any stress. Since the time he was born and certainly since the time we knew something was “not right” and very very different about his development, a great deal of attention has been devoted to him, to teaching and taking care of him and to attending to his needs and moods. And more often than not, that attention (which has also been from teachers and therapists, besides us) has been because Charlie was having “challenging behaviors.”

After Charlie and I lugged out the groceries and put them in the back of the black car, I did my best (in a lowkey way---over-effusive praise can be alarming in its own right) to let Charlie know that he’s doing beyond great.

It was the worst of times, it was the best of times......

: : : :: : : :: : : :: : : :: : : :: : : :: : : :

Having posted this, I realized there’s a bit of irregularity about the title but the more I think about it, the more apropos it seems.

autism Asperger’s children mother parenting supermarket shopping

49. Jim buys a kayak

Mon, 14 Sep 2009 01:06:36 -0400

I know that there is much that is difficult, terrible and tragic reported in the news about autism and individuals on the autism spectrum and those who care for and support them. Charlie’s school situation is currently fraught with difficulties and complications; it is the start of the second, and first full, week of school for him today, and already we have requested a meeting with his Child Study Team concerning his Behavior Intervention Plan and are making arrangements for his old Lovaas consultant/behaviorist to observe him at school.

In general, the feeling that we got at a July IEP meeting for (called by the school district) concerning Charlie’s current placement is the same. It is thought in the district that Charlie ought to be educated in a placement other than the in-district self-contained autism classroom in our town’s 1400-student-large middle school in which he is currently enrolled, and where he has the same teacher, almost the same staff of aides, and the same classmates as last year. It was back in June 2006 that we moved into this particular town expressly so that Charlie could attend its program; we lived first with Jim’s parents and then in a rented apartment. Jim and I have far longer commutes to our jobs and it has not been easy. So, to see the school situation in the state that it is in is (to understate the matter) distressing.

It’s a situation not unfamiliar with many families, quite a few of whom we have recently spoken to. Most of these families have children who are around Charlie’s age, grown out of elementary school and still needing special education services and classrooms. In the past few years there’s been more and more calls for services, programs, housing, jobs, for adults on the spectrum and we can’t applaud these efforts enough. In the meantime, the adolescent/teenage middle/high school years---years of transition---have proven to be quite a struggle for Charlie. While there were smiling and cheery staff, bright and well-lit classrooms, and a sense of possibility and hope when Charlie was in pre-school and elementary school, the picture for him and many other older children with disabilities just seems a lot grimmer and certainly a lot less fun, with a huge (and, of course, necessary) emphasis on preparing for and worrying about the future. Sometimes I wonder if there’s too much of a push to turn kids like Charlie into little adults, ready to use the vocational skills that have become the focus of their education and all grown up, with childish things put away.

There’s a reason I’ve continued to follow the overwhelmingly sad story of 18-year-old Sky Walker. I don’t know much about him or his late mother, Trudy Steuernagel, but what has happened to their family are things that I want to think are very far from us. But I know these things must be reflected upon.

So yes, life for Charlie and life raising Charlie comes with a lot, with regular dollops of “reality checks.” And yet, it has been the case for our family that, even at the time when things have been very tough, Charlie has persevered, with us in tow. As Jim reminds me, the years (aged 7-9) that he had a lot of trouble with behaviors like head-banging overlapped with what could be called glory years, when Charlie learned to ride a bike and Jim pedaled them out of parking lots and parks and into suburban Jersey streets.

Perhaps you won’t be surprised to hear that in medias res difficiles, si non difficiliores aut difficillimis---difficult, more difficult, if not the most difficult of all---we went on our High Line and Hoboken jaunts and, yesterday at the ocean, Jim bought a used kayak. Under the scoffing glance of two younger Jersey dude types (look, I know I’m 5 feet tall and a klutz handling my end of a two-man kayak), Jim and I loaded our new possession into the back of the black car. We drove it to a park with a place to launch boats. Charlie waded into the water with a sweet smile as Jim and I took out the kayak, seats, paddles, life-jacket for Charlie, and a diet Coke and a Sprite. They went north, they went south. They got a grand view of some really grand beach houses. They paddled into some reedy marshes where, as Jim recounted, there were some highly suspicious smells. They passed a certain little cedar shingle beach house but Jim decided not to venture into the inlet where it’s located, as doing so required passing under a quite low bridge. They came back smiling and at ease and we all went to swim in the ocean.

Lifting and tying the kayak unto the roof to the roof of the black car was, as expected, a bit of a challenge.

All I can say is that we are, if I may so, more than a little familiar with challenges of many sorts.

And I think you get the picture that if the most challenging thing we ever had to do was to bungie cord a kayak on the roof of our car and get it home (preferably without stopping traffic on the Garden State Parkway should the kayak fall off), we’d consider life well, a beach.

autism Asperger’s children mother parenting beach ocean kayak

48. Hoboken Idyll

Sun, 13 Sep 2009 01:38:01 -0400

Technically, our trip into Hoboken on Saturday afternoon was not an idyll, which is defined as a “series of events or circumstances or pastoral or rural simplicity.” Jim had gone into New York in the morning to attend a memorial service for the screenwriter Budd Schulberg. Charlie and I spent the first part of the day in a lazy Saturday way (bumming around the house, going to the bank, going to the grocery store). It was raining (and had been since Friday) so we decided that, rather than Charlie and I go into New York to meet Jim, we’d go to Hoboken.

Charlie and I caught the 3.54 train into Newark Penn Station.

Charlie settled into his seat with a smile. But once we got the Newark train station (not world’s most, ah, friendly and orderly place) he started crying loud and very distressed and pushed his hands over his ears. I told him we could take our time and there was no hurry. A woman who worked for NJ Transit asked if he was ok and pointed us to where to catch the PATH train (not at its usual platform). Between sobs, Charlie said yes to getting a Sprite and a crumb cake. He was still crying when we went through the turnstile. He found one of the few remaining seats on the PATH train, asked for his green worry beads, and sat quietly; sat back and enjoyed the ride (and his snack).

We met Jim in the waiting room of the Hoboken train station.

Then we walked down Washington Street to an old favorite, the Mile Square Café.

After that, we visited the Hoboken Barnes and Noble, where Jim’s book is on sale in the New York section.

Back to the Newark train station via the PATH.

And then onto NJ Transit.

Unfortunately some individuals who must have imbibed various beverages were being very loud on the last stage of the train ride and Charlie became agitated. (It also didn’t help that he, and we, didn’t realize how low the rack above the seats is: Charlie knocked the back of his head on it as he stood up). Once off the train, we were soon back in the black car and headed straight home.

Another definition of “idyll” is that it’s a “carefree or lighthearted experience.” Not every moment of our Saturday going to and from Hoboken was such but on the whole---especially with a generally smiling Charlie, looking around (especially in the bookstore)----it was one fine idyll in some thoroughly urban environs.

autism Asperger’s children mother parenting Hoboken New Jersey train

47. It Might Be Progress

Sat, 12 Sep 2009 01:08:35 -0400

We took Charlie to an appointment with a neuropsychologist Friday afternoon. We had told Charlie that we’d be picking him up from school to see a “doctor” and he’d repeated “doctor” calmly: While this was Charlie’s first time meeting this neuropsychologist, the tone of his voice and his facial expression suggested that he was fine visiting the doctor. It also helped that the neuropsychologist is in the same office as Charlie’s neurologist; good to be in familiar surroundings.

Jim dropped Charlie and me off and went to get Charlie a snack (it was past 4pm when we got to the doctor’s office and Charlie has lunch before noon, and the ride was long and slow at times; we figured the appointment would take some time). I’ve written before about the challenges of this office’s waiting room, which is darkish in decor and contains many hard edges. Charlie was quick getting out of the car and (with his worry beads and iPod in my bag) quietly followed me in. He took a seat while I talked to the front desk and looked at some other children putting together a plastic car ramp. One of the children was hum-singing quite loudly, another talking in a monotone, and Charlie smiled watching them: Just good to be around other kids.

Just a few months ago, in June, we’d been on pins and needles with Charlie in this waiting room. Previously, the long car ride alone had frayed his nerves and he’d gotten very very upset either in the car or the parking lot, crying and swinging his head in distress. Yesterday afternoon, while hungry and tired after his first week back to school, Charlie was fine and good waiting in the waiting room and very patient during the two-hour-plus consultation that followed.

I am not sure how his days have been. While his teacher wrote daily emails last year, so far we’ve received a total of one email about Charlie on Wednesday (and two emails addressed to all the parents of students in his classroom). We’re already talking about meeting with Charlie’s Child Study Team about his behavior plan.

Jim and I are reflecting on what we discussed with the neuropsychologist. So far at home, we’ve been able to keep up the summer’s “Camp Charlie” spirit. I know we’re buoyed seeing the interest in Jim’s book about “the glorious struggle.” And certainly, it’s all been good with Charlie maintaining (with the challenges at school) his peaceful easy-feelingness, and showing a great deal of heart.

And, when there’s Vietnamese summer rolls around (requested by Charlie instead of a hamburger on the way home), a healthy appetite.

autism Asperger’s children mother parenting doctor health health care

46. Post-Excavation/Speech Evaluation Analysis

Fri, 11 Sep 2009 00:55:34 -0400

As indicated by this post’s title, I’ve got my archaeology class on my mind: The class meets Friday morning and I’m typing this Thursday night between reading about palynology, petrology, lithics, and the remains of Minoan “palaces.” Thursday afternoon was consumed by:

(1) A conversation with the school district speech therapist (she also has a BCBA) who is doing Charlie’s (overdue) speech evaluation. She had tested and observed Charlie in summer school in early August and I found out a bit more about these today as we were not present at the August evaluation due to concerns that, in the words of a special services administrator, “the presence of any other adults would be a distraction to your son and therefore tamper with the results.”

(1) Charlie and me going to the fancy schmanzy mall and waiting around at the Apple store to deal with a home technology issue.

(1) Charlie (later in the day) telling us “socks on, shoes on” and then sitting on the couch and standing up with certain expressions on his face. He asked for the “black car” but still kept standing in place. A half-hour passed and he told me he needed to take of business....... just last year, if wanted to get in the car and go, regardless of other circumstances (like how his stomach and insides were feeling) Charlie insisted on leaving as a result of which, well, there were results (in the car). It was very good to see that he could tell us what he wanted to do but then, with other considerations in mind, wait until business was settled.

In reviewing the different techniques used in archaeometry, the scientific analysis of archaeological materials---x-rays, isotopic analysis, DNA analysis---it’s been highlighted to me how one first has to get one’s materials, artefacts, evidence. After this begins the (sometimes) laborious process of analysis and interpretation. In archaeology, the “stuff” comes out of the earth (or sometimes the water, if one is excavating a sunken trading vessel). In a speech evaluation for a child with disabilities, it’s the testing and observation that provide the “stuff” on which a report gets written up.

And, in excavating, “tampering with the results” (to refer to the words of the special services administrator) is inevitable. It’s regularly noted (by archaeologists) that “all excavation is destruction”---once you’ve dug up a site, that’s it; there’s no second chance. Disinterring pottery sherds, pointed stone objects, human remains, means that one is taking things out of the environment where they’ve survived for hundreds and thousands of years---that one is “tampering” with, if not exactly “the results,” the materials. Perhaps it could be said that to “tamper” is to be human; our archaeology textbook notes that “debates between archaeologists often stem from differences in their assumptions” and it’s no less the case in debates between scholars, whether interpreting historical events or translating a fragment of Sappho’s poetry, or (I bet you saw this coming), analyzing and writing up the results of a speech evaluation.

Which is why, under the provisions of IDEA, one always has the right to request an individual educational evaluation (IEE); another assessment and interpretation.

Enough, ok, with the analogies, and back to DNA analysis (a topic which leaves me feeling very glad that I wrote many a post on genetics and autism---go here to take a survey on autism and genetic testing which a friend put up). What do the techniques of archaeometry tell us about the pottery and frescoes found on the island of Thera?

And what do Charlie’s verbal and non-verbal communications noted in (3) have to say about him?----That, I leave to you to infer.

45. The Glorious Struggle

Thu, 10 Sep 2009 00:59:53 -0400

When I was in graduate school, I was in, and at one point quite active, in the Graduate Employees and Students Organization or GESO---in a graduate students/teaching assistants union. Our foe (if I may use that word) was the administration of the Very Large and Famous University that we were students at. We called for a just and living wage for grad student teachers and were allied with Locals 34 and 35, the unions for the clerical and maintenance workers. There were rallies, teach-ins, sit-ins, grade-ins, lots of meetings. Another student and I were co-editors of the union’s newsletter, The Voice, in which we chronicled the efforts of, in the words of my friend, “the glorious struggle.”

As I reflect on it, writing The Voice was an early precursor to......blogging. I mean, vox, Latin for “voice” (as in my old blog, Autism Vox) (my lamented old blog, as it’s not what it was when I wrote it; one moves on).

I’m not Charlie’s voice: I’m his mother and more of a halting translator to all the things he’s trying to communicate, to say. I’ll never be a native speaker of how he expresses himself, but Jim and I do aspire to be as close to “fluency” as we might be. One thing’s for sure, we’re as tight a team o’ three as ever, especially after spending the whole summer as “fellow campers.”

Now we’re all of two days into Charlie’s new school year and have already had two days of buscapades: If you don’t try to find some humor, if not slapstick comedy, in waiting for a bus that never came because the driver was told to pick up your child in a place that no one had told you about, it’s gonna be one really long school year ahead of you. (Though, actually, I think I should probably start thinking of the whole situation as more theater of the absurd, calling on Vladimir and Estragon: Tuesday morning, Jim and Charlie and I felt more like we may as well have been waiting for, yes, Godot, much less a little yellow schoolbus.) From an email from Charlie’s teacher on Wednesday, we learned that he’s one moment smiling, the next moment, well, not (“aggressive and self-injurious”; here come the incident reports). Numerous emails to various parties (school personnel and otherwise) have been written and we look forward to meeting soon with some, or all, or most of, those various parties.

It’s a glorious struggle, it is.

Charlie was hot and sweaty getting off the bus on Wednesday and definitely in need of some time to himself, with his iPod and worry beads: Could these be more appropriately named? I won’t even begin to think what worries he’d reel off if he could. It might seem strange to say, but I’ve more than often thought that maybe the whole point of my going to Greece in March was to bring Charlie back those three strands of beads. (I wouldn’t mind a strand myself to finger but the one with the eye beads I got for myself was eagerly acquired by Charlie, and gladly given by me.) (Though it was just yesterday that a student said to me, “Dr. Chew, you worry too much.”)

It seems we’re again in a bit of an exploratory phase as to what Charlie’d like in his lunchbox. His old blue lunchbox never quite fits the containers of fruit, soybeans, crackers, a bagel, more fruit, two juices, maybe some rice, maybe some shrimp, maybe some random item that appeared in our refrigerator; I’ve been putting it all in two lunchboxes. Charlie seems to be famished when he comes home and, yesterday, to the supermarket we went. (We also left with some DVDs that were in a bargain bin at the store.) Charlie ate and Jim came home and they got out the bikes and, while I was retrieving laundry from the dryer, Jim called. I took a deep breath and braced myself to grab my car key and bag and run for the car and help Jim out with an upset Charlie at some intersection.

“702,” said Jim.

At that time yesterday evening, On the Irish Waterfront was the #702 in Amazone rankings. It went all the down to #549 before going back up.

It’s Jim’s book, much of it written, much of the narrative worked out, as he sat at a little wooden table on one side of the living room of our house, on the slightly sagging but still sturdy wheeled office chair my parents bought for me from a Price Club in West Haven, Connecticut, in 1990 when I was starting graduate school. (They also bought the table, from a long-gone Conran’s in New Haven.) It’s a book about struggle: of the longshoremen who worked in the ports of New York and New Jersey; of Father John “Pete” Corridan, the Jesuit who tried to get those men to stand up against the crooked “Irish kingpins” (as noted in this review), and who---after he failed to do so---turned to the outside, to journalists and to the late screenwriter Budd Schulberg to uncover the waterfront and its code of silence; of Schulberg and director Elia Kazan to get a movie---the 1954 Academy Award winning On the Waterfront---made.

Of course, there’s no mention in On the Irish Waterfront of autism, special education, school districts, IDEA, or any of the sort of things we’re constantly in a struggle about. But if one should see the story of the Irish waterfront and the fight for the soul of the port as told by Jim as a sort of analogy, even an allegory, for our advocacy and efforts on behalf of a boy named Charlie, one would know what it can feel like to be here on the autismfront, circumventing and noting and listening, oh how carefully listening, for what’s being communicated in code, be it finding emails from your child’s teacher now cc’d to the case manager, or reading the lines and between the lines of those emails with thoughtful care.

A struggle, it is. And because we know it’s for you, Charlie, it’s for you, how glorious it is.

44. A WSJ Review and a Balky Start to the School Year

Wed, 9 Sep 2009 01:20:29 -0400

First things first: This is a review of Jim’s book, On the Irish Waterfront: The Crusader, the Movie, and the Soul of the Port of New York in the Wall Street Journal. It’s entitled Pier Pressure and is by Edward T. O’Donnell, a history professor at Holy Cross College.

And this is a Charlie waiting for the schoolbus on the first day of school, September 8, 2010, his first day of seventh grade, at 7.19am. Charlie never got on the bus in the morning; I called the X County Education Commission a couple of times and got a message and then a voicemail box that was “full.” I called the Board of Education and Jim emailed various school personnel while I drove Charlie to school. Charlie did take the bus home (the Board of Ed called to give us the number of the bus, though it wasn’t the same as the number painted on the bus that’s more visible when the bus is in motion). Charlie’s ride home took 45 minutes, which could be because the bus driver is (as she told me) new this year, or because Charlie is (or should have been) the first on, and the last off.

As it turned out, the bus driver had stopped by in the morning. She had been instructed to pick Charlie up beside the mailboxes on the entrance to the parking lot where our apartment is. There’s no sidewalk there and this entranceway tends to be busy, especially in the morning, as there’s a maintenance shed across from our apartment and various utility vehicles going in and out like this one:

Also, commuters often park in some extra spaces in the lot because it’s a short(er) walk(run) to catch the bus to New York. Charlie is pretty good around traffic (thanks to all the time on his bike) but the sidewalk-less by-the-mailbox-spot is not a great place to wait, especially with morning traffic whizzing by. We’ve lived in this apartment for two years and bus drivers have driven further into the parking lot to where our car is parked, and where it’s much safer to wait. The new bus driver didn’t know this and, I gather, had left when Charlie was not at the mailboxes.

We, however, did not know that Charlie was supposed to be waiting besides the mailboxes as we did not even know when Charlie was to get on the bus until last Friday, after Jim and I had both called the Board of Education. (I also called the X County Education Commission but still got the “this voicemail box is full” message repeatedly.) In our past three years in this school district, we’ve usually gotten a postcard or other notice in the mail and sometimes even a phone call from the bus driver. This year, nada. (I did check with another family whose child is in Charlie’s class and they had gotten notice about the bus last week.) We also never got a placement letter containing, among other information (as I understand it), the code number so we can deposit funds into an account so Charlie can buy lunch. (Yes, emails have been sent.)

An-y-ways, that’s a lot of information about the bus situation for Charlie which hopefully will be somewhat smoother today. I’m not sure about how his day was as his teacher sent the same email to all four of the families in Charlie’s class. We’ve gotten individualized emails in the past and we’ll see what happens this year.

So, yes, Charlie’s “back to school 09” has been a balky one, already full of various hindrances, if you will, that are getting in the way of moving forward (and, indeed, to getting to school). But maybe there’s a way to work through those obstacles, those “baulks.”

I’m teaching Archaeology this semester and have been lecturing about the methodology and techniques of excavation. Yesterday I talked about trenches and test-pits or sondages and also about baulks, which are strips of earth left between the trenches where one looks for artifacts and other evidence of human activity in a site. Baulks make it possible to study the stratigraphy of an area, the series of layers in the ground containing as-yet-unknown information.

This school year, rather than trying to plough right through any obstacles in warrior mom mode, I think I might try, indeed, to dig us some trenches where we can hunker down in tough times, while also attempting a few test pits (because you never know, where ideas or help may lurk). And while we’re settling into those trenches, it’ll give us time to make a good study of the baulks---the undug strips of earth hiding who knows what secrets---inbetween, and figure out what’s really going on that can’t be seen.

Charlie himself was not too perturbed by these transportation or other shenanigans and, after a very large snack + early dinner, pulled out his bicycle and went for his usual ride with Jim, coming home just as it was getting dark.

43. Trepidation

Tue, 8 Sep 2009 00:37:29 -0400

All I can say, I am full of this---trepidation---today as it is Charlie’s first day back at school after last year’s school year came to a really tough end. (As in, a little stack of incident reports and a district-requested IEP meeting in which we were informed, Charlie was not to return to his public school classroom.) Summer school went pretty well, though it was only a half a day, started later, and took place in a school building emptied of most of its 1400 adolescents (only Charlie’s class and one other special education class were there). Today school is back in session with all of those 1400 students and the bus comes at 7.19am (as we discovered last Friday after we made a couple of phone calls; we did not receive any information about this as some other families did).
Charlie (and therefore Jim and I) had one of his best summers ever, biking and swimming and kayaking and shopping and walking in New York and sitting in offices at my college campus and celebrating the publication of Jim’s book, On the Irish Waterfront.
Waiting for the PATH train to go to NYC (9/4/09)

So I’m full of trepidation about Charlie’s first day at school and really for all the days and weeks to follow. Charlie often does all right at the start of things and then, after a lag, things get difficult. Jim and I have been talking and planning a lot about what to do in the event that “something” happens and I feel good about that, but still, trepidation.

Being me, I have a certain poem on my mind, “A Valediction Forbidding Mourning” by John Donne. I first read this poem when I was in the ninth grade, in my first year at a new school. The speaker of the poem addresses his wife before he departs on the journey. He asks to refrain from “tear-floods” and “sigh-tempests” as such would “profane” their love. And then, in the next stanza, he writes:

Moving of th' earth brings harms and fears ;   Men reckon what it did, and meant ;   But trepidation of the spheres,   Though greater far, is innocent

Men on earth try to understand the “moving of th’ earth” (as an earthquake); the poet says that his love for his wife is something “above” the earthly and more akin to a shaking in the celestial spheres (these would be the concentric globes that were thought to surround the earth, according to Aristotelian cosmology). The poem closes with a beautiful image of a compass: Her soul is the “fix’d foot” and “leans, and hearkens after” the other moving foot as it “roams” and moves. And I suppose you could say, in regard to Charlie, I feel rather like that “fix’d foot” that leans after my boy when he goes out into the world, away from us, and stays fixed and steady, waiting for his return.

Yes, a little poetry (and poetic exegesis) is what I turn to in time of trepidation. Charlie, on the night before his return to school, alike turned his thoughts to something comforting, something well-remembered: The garage door of my in-laws’ large split-level house.

If you read about Charlie’s and our lives on my Autismland blog, you would have read about how we moved in with my in-laws in June of 2006, so Charlie could go to school in this school district. We moved into our own apartment in September of 2007 (yes, living with them did not work out). Charlie had been very glad to find himself living in his grandparents’ house, which has a huge (an acre’s worth) of a yard, a long driveway, and---his longtime favorite---a huge garage (originally with two doors, expanded to three). After we moved out, Charlie refused to go to the house and barely tolerated seeing it. And then yesterday, after he’d had dinner and while Jim was speaking about his book in New York, Charlie asked for “close open garage door.”

It was a 10-minute ride to my father-in-law’s. (My mother-in-law is now in a nursing home.) A few blocks away, Charlie said “no.” And then “yes.” So I told him I would drive across the street from the house and he could make up his mind. He said “yes” when he saw the house. I parked the car and he ran out and up and down the driveway and in front of the three garage doors He was wary of nearing the front steps. He ran under the huge pine trees a bit and tapped the wall between two of the garage doors. He smiled.

Then Charlie went to the sidewalk and got in the car, and we went back home, and he went straight to bed.

A little nostalgia for both of us, to get us to the next, big step.

42. What We Learned This Summer or, Living on Charlie Time

Mon, 7 Sep 2009 01:04:45 -0400

I’ve noted in a couple of posts that Charlie has been saying “no” to getting out of the car, when the destination is a place he doesn’t want to go to and Jim and I do, as he did about a visit to see the High Line in New York via Jersey City. He also did this on Saturday after we’d returned the kayak. We suggested going to swim in the ocean---we were at the beach.. Jim sent down to look at the waves and I stayed with Charlie and 15 minutes passed and Charlie got out on his own and smiled really really big to see the ocean.

Charlie’s had this refusal to get out of the car before. As he’s far past the days of gentle pulls of the hand (any physical effort on our part makes him get annoyed, fast), we’ve had to think of other strategies. Picture schedules have been often suggested: Such a schedule would have, for instance, photos of him at each step of being in the car and getting out of the car. At school, they use a lot of timers and he’s to do whatever is requested in a certain amount of time. We’ve had mixed success using both the picture schedules and the timer at home; for one thing, Charlie associates them with school. That’s not to say he necessarily finds the schedules or the timer negative, but that it’s a school thing vs. a home thing and, like many of us, he has a sense of the distinctions between these.

Jim and I have adopted a strategy that some might construe as “giving in” too much to Charlie. When Charlie won’t get out of the car, or agree immediately to doing something he’d rather not, we’ve acknowledged his position and then waited. We’ve been very careful to keep language to him minimal, only repeating our requests after about five minutes. And, we’ve been very conscious of our own feelings and any non-verbal demands or requests we might be communicating to him. After a short period, we’ve asked him again about doing whatever and if the answer is a “no” or an “all done,” we’ve waited again.

This unscientific method has so far had good data to back it up. Easy-going parental waiting has given Charlie his space, while we’ve still been able to get him to do things that he says he doesn’t want to do but that we (being parents) think he might enjoy and benefit from, if he just let himself try. Sunday was a day of gloriously beautiful sunshine with a light breeze, just right for riding bikes for bagels. Charlie would have none of that and was very insistent on the car, sitting in his usual spot in the middle of the back and seat and making it clear, no bike ride. We insisted on the bikes, though very quietly, all the while acknowledging what Charlie was feeling himself and not insisting that he ride bikes in five minutes. We did our best not to be or act ruffled. We didn’t place any ultimatums on Charlie (“10 minutes max or no bagels”)---those kind of statements seem to make Charlie upset.

More than a few times, we’ve heard school personnel or therapists say, outright or in passing, that Charlie’s behaviors are better at home because we, his parents, “don’t push him” (to get out of the car fast, for one thing) or we “just give him whatever he wants” or because “he just gets to do fun things.” This is a sensitive topic, but one I want to address partially because I’ve had a lot of difficulties negotiating these notions with Charlie’s teachers and therapists. The first thing I would say is that, home is home and school is school, and that goes for any child. The second thing is, we parents place plenty of demands on our children, though in a different format and structure. Third, what might seem fun (going to the beach) can in some ways be a reason for anxiety and worry (and outbursts of various sorts) in Charlie.

I guess I would say, Charlie faces plenty of demands and requests from others all the time. He has to do lots of things he’d rather not in general. He does need to be taught and pushed to do these things, but he also must have accommodations that are tailored to his learning and communication needs. I know the world can’t revolve around his needs. But learning to function on “Charlie time” can go a long way.

I’ve made it a goal with myself to be peaceful easy-feeling in my interactions with the school and not throw blame around (however much my maternal instinct rises in me). Teaching is hard work and Charlie is not world’s easiest student to teach. Jim and I have done our best to teach Charlie this summer and we know the challenges. It’s been at the top of our goals to minimize Charlie’s really big tantrums/behaviors/explosions and some adapting to his needs and to his perspective is in order. If we can change what we’re doing to help him learn something, we’ll try it, and then work on building from there.

I know I’m being a bit vague. Jim’s and my strategies are never the sort of thing that fit easily into bullet points. We have several years of teaching experience between us and I think one thing we both know is that teaching is most definitely an art and one that requires being ever flexible and adapting your teaching to where the students are, with the goal of getting them to a place they may not even be aware of or have any desire to go to.

If we hadn’t waited for Charlie to exit from the car on Friday he wouldn’t have had the happy walk up high on the High Line or been able to enjoy a taxi ride through midtown Manhattan. It might seem that we were “caving in” and letting his waiting determine our plans, but we made it clear that there was a bigger goal we wanted Charlie to accomplish, getting to New York. And he did.

Now if Jim and I can get some good two-way communication going with Charlie’s school. We’ll have to work on our strategy for sure.

(And yes, Charlie did get out of the car Sunday morning and had a fine bike ride, with a stop for a mishmash whole wheat bagel.)

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As for why Charlie seems to need a lot of time to transition from one activity to another and, too, to get his mind around one thought to another (riding in the car to get bagels vs. biking to get bagels)---I’m no scientist, but what I’ve read about autism and synaptic connections in the brain suggests to me that those connections don’t happen, or happen very slowly, or happen irregularly and inconsistently, in Charlie. A new study in the September 4th Cell suggests that a brain protein (srGAP2) can affect how cells “change shape, migrate, or differentiate.” srGAP2 has been implicated in a type of severe mental retardation syndrome, the 3p- syndrome, and scientists now plan to study whether it might be involved in other forms of mental retardation and in autism.

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