We Go With Him

Action and Reaction

We had much more of an adventure than we usually have been attempting on Sunday. We had made plans to meet a friend from Philadelphia in a river town on the Delaware after Charlie and Jim had done a 16 mile bike ride on a lovely bike path, last visited in September.

Charlie was a bit on the grim side as we drove on not the usual route, and for far longer than we do for our usual Jersey horse country rides. He started smiling on the last stretch of the ride and was very eager to get on his bike and go on a lovely sunny, and warm for November, day.

After the ride, we had a nice, if noisy, walk on the bridge over the Delaware that separates New Jersey from Pennsylvania and then, after getting some sandwiches (though not for Charlie, as he does not eat sandwiches -- aftereffect of years on the gluten-free casein-free diet) and walking back to the car. Charlie sat in the car by his preference as we talked, getting out to shake hands with our friend and say bye.

He started crying not exactly out of the blue as we drove home. We counted multiple anxiety-inducing factors: impending holidays, impending visit of my parents,  emotions after seeing our friend and after going to a place he'd been to years ago, stomach pain, being hungry (the little river towns had lots of nice places to eat but not the sort of places that are to Charlie's liking and it wasn't the moment to try to get him to eat something he's not used to), encountering about 20 motorcycles all revving their engines at once.

He stopped crying gradually, but he remained distressed. The sight of a McDonalds that we've gone to before and that was on our side of the road was a huge relief to all.

We got home fine, Charlie seemed to want to nap, couldn't, came downstairs, looked in the refrigerator, looked at us, got extremely upset -- it is indeed the season for holiday anxiety. We'd been anticipating a behavioral storm: Just having such a great day, having so many experiences can occasion a big response in Charlie.

After he was soundly asleep, it started raining, a change in the weather that Charlie must have also been sensing and discomforted by.

It was definitely still a very good day. In the past, I think we would have seen Charlie getting so upset as cancelling out the earlier part of the day, but we've come to see him doing so well and so much, and then having the storminess, as of a piece; as action and reaction that we toughed through together.

And yes, we intend to back to the bike path, and the river towns.

 

 

Don't Let It Get You Down

I was going to write a post about the helmet. We're now dropping Charlie off to school in the morning and picking him up; if he rode the schoolbus, the school district insists that he wear the helmet. The helmet now resides strictly at the public middle school in our town. In the morning, Charlie's teacher and an aide walk down the hall with it and meet Charlie at the four metal doors. In the afternoon, Charlie is usually sitting in the office (leaning over, head down) and his teacher or aide remove it. The whole thing makes me feel [UNDERSTATEMENT OF THE YEAR] incredibly aggravated. Because when you get down to it, the helmet is being strapped on my kid's head not because some psychology professor/behaviorist/ABA consultant says so but, ultimately (not that anyone would ever say it) because the district's lawyers say so. So much for education in this school district.

But enough of bile, black or yellow. 

Yes, it's what I'm supposed to feel, moral outrage, maternal anger, a full dose of spleen at the heinousness of it all. When I feel such strong emotions, Charlie always, always picks up on them. And that's not the sort of peaceful easy-feeling parenthoodness, of acceptance and hopefulness, that I'd like to teach Charlie.

Charlie's been clamoring to hear a CD of Louis Jordan and His Tympany Five in the car (he indeed seems to have relinquished his iPod, stocked with Coldplay, U2, Jimi Hendrix, the Ramones). It's been boogie-woogie to that 8-beat rhythm in the black car and I'd snap my fingers if I could (I can't snap my fingers) (really, I can't! I keep trying). Louis Jordan is highly danceable stuff and (as Charlie wants to hear the CD on the way to school), I've found myself doing a little two-step and sway as I walk with him to the door. I nod hi to the Assistant Vice-Principal and the policeman and wave my boy good-bye. 

If this all sounds ludicrous and, I don't know, goofy---what is with this woman, she's the one with the huge kid with the plastic helmet with the face mask and straps---I suppose one could see it that way and could see our life with Charlie as having become some sorry mess. But really, and I can't say it enough, the messy part of life with Charlie has been pretty much confined to these days to the beige and brown one-story structure that is the public middle school in our town. 

The rest of the time:

I have been pausing to feel sad about Ngin Ngin passing for sure, grinning at so many good memories and finding myself lucky to be able to call her my grandmother.

We have been celebrating Jim's book On the Irish Waterfront: The Crusader, the Movie, and the Soul of the Port of New York. Last night he spoke at a local library. (And tonight he's speaking at Words bookstore in Maplewood.) Charlie and I dropped him and some twenty books off. We sat in the car in the parking lot for awhile (yeah, what a glamorous life we lead) and then Charlie said "yes" to going in. I found a door to the room (actually in the community center) where we could hear Jim (Charlie was all grins) only it wasn't the main door, but one that opened directly to the front of the room, so that Charlie and I walked in right behind Jim speaking about containerization. We were introduced and then Charlie wanted to go out, so we walked around the community center, watched a boy Charlie's age playing what was maybe an Xbox (I wouldn't know) and then wound up back in the room where Jim was now signing books. 

I chatted with some friends and was happy to be introduced as the so-to-speak missus. A man heading out the door told me his son was "like Charlie" and talked about how the town's schools had provided him with what he needed. A woman said she was an occupational therapist for children in Early Intervention; she commented on how well Charlie was handling all the voices, noise, new people.

Yes, things are all right and we drove home ebullient, and listening to guess who. 

 I'll be dancing. I will.

A Small Lesson in Charlese (#571)

"Walk squishy ball yes!"

Charlie and I had just gone on a walk to the train this afternoon and were waiting for Jim to come home----why would Charlie want to go anywhere else, when "Dad's coming home?"

"Walk squishy ball."

"You can go walk in the driveway with the ball," I said----guessed, really. Charlie likes to pace and run up and down our driveway and I wondered if he just could not recall the word "driveway" at the moment.

It turned out that I was right: Charlie grabbed the ball and ran outside (and up and down the driveway) until Jim drove up in the green car. One word can have a lot of associations, but you have to know the language----Charlie's being "Charlese," I suppose---to know the full range of connotations a single word can have. So, for instance, is "socks" Charlese for "I want to put on my shoes and socks to go out." We can prompt Charlie to say this long sentence bit by bit but, right now, it is quite a mouthful of words for him to pull up at one time.

I was to be reminded of this again when we went to see a very good of friend of Jim's, Richard Dougherty. A native of South Jersey, Richard went to Japan twenty-five years ago to teach English and has lived in Tokyo ever since. He comes to the US every few years with his Japanese wife to visit his family and one thing about him always stands out, especially to Jim:

Richard speaks American English like a foreign language. Remnants of his South Jersey accent remain, but here is a Jersey Irish guy speaking his native language with the vowels accented differently. He pauses to recall words. He thinks before he responds and as he speaks. His voice rises and falls in speech patterns that are not those of English.

I'll hazard saying that American English, or maybe just language itself, is "foreign" to Charlie. The "building blocks" of language for him have not been "nouns, verbs, adjectives, pronouncs, etc." such as I go through, chapter by chapter, when I teach Latin and classical Greek. The building blocks of language for Charlie were the vowels and the consonants, each of which was taught to him one by one----teaching Charlie to talk back when he was three years old required teaching him to learn to move his mouth and tongue, and to watch how we formed each sound. I don't know what "fluency" level Charlie will reach in English----at the moment, he is once again enrolled in the 101 or "elementary" level class----who knows if he'll proceed to "intermediate" or "advanced."

And so it behooves me to learn a little, or a lot of, Charlese which is the language---the mode of communication---Charlie is the native speaker, and I quite the beginner.

As we got back into the car, Charlie called out "turnahn!" and "Hendricks!"

"He likes Jimi," Jim grinned to Richard. "Remember this?" Jim turned up the volume and Charlie sat up straight and serious as his music----his kind of sound, the voice of the electric guitar----streaming out of the black car's windows.

Time Zone Travel (#559)

"Turnahn musix!" Charlie called as soon as we got into the black car at the Philadelphia Airport. He had been singing a certain lilting fragment on and off in the last hour of our flight back from California: I flipped through the CD case but could not find Charlie's request. I pulled out a purple paisley-decorated disc: "Jimi Hendrix?"

"Hendricks, yes," said Charlie and he sat straight up on his knees, beaming. Suddenly lines of white light and sparkling circles burst out in front of us from Lincoln Financial Field, where the Philadelphia Eagles were about to play the Atlanta Falcons. Charlie's head kept turning from side to side as we drove past Citizens Bank Park where we had seen the Phillies play back in July, past downtown Philadelphia, and, after a ways, past the Tacony-Palmyra Bridge, Palmyra being where Jim's best friend Mike who died almost three years ago had last lived: Another sentimental journey.

It's always a journey in Autismland, every day, is it not----I turn around to glance at Charlie in the backseat and still see the big baby whose wet, black-eyed head I first beheld more than 9 1/2 years ago in a room at the Missouri Baptist Medical Center, and then see those same eyes narrowing as Charlie concentrates on "Little Wing." And maybe because, as the parent of a disabled child, one tends to think about "big questions"---"what will happen when Charlie is retirement age?"---all the time, one often feels that one is traveling at least two different time zones, and when to sleep, or when to start brewing the morning coffee, is hard to tell.

Charlie's sleep habits have been so erratic for the month of December---staying up regularly until 1 or 2 am, taking a several hours' nap at school---that I figured going to the West Coast and being on Pacific Standard Time, three hours "behind" time in New Jersey, would wreak further havoc on his biological clock, and that is indeed the case. It is 2.30am here in New Jersey (11pm back in California) and Charlie is completely wide awake and speaking a steady stream of words or syllables. (Tuesday morning, when he goes back to school, is going to be interesting.) Charlie could not sleep at all yesterday; I know he knew it was his last night in California and he was awake till 1am.

This worked out to his advantage as far as air travel: Charlie, roused at 5.30am, went right back to sleep during our 7.15am flight and only awoke in the last hour and a half. I have accordingly become convinced that the best times to fly with an autistic child, or at least with my autistic child, are in the evening on a red-eye flight when one's child has had a full day and is glad to sit, or at the crack of dawn, when one's child can promptly go back to sleep. If there is one lesson I have learned from all these days and years with Charlie----and as it is 2007 and Charlie was born in 1997, I can start speaking of a decade with Charlie---it is that you do what you gotta do to keep him happy, yourself more or less calm, and so be it.

On the plane, a 5-month-old cried and wailed; Jim and I thought: "We've heard louder." Across the aisle, a black warm-up clad Asian mother passed a steady stream of bagels, muffins, cream cheese, and juice to her three children in the row before her (they also had DVDs, Bratz dolls, and a Game Boy), while attending to a preschool-age boy: When you're traveling, it helps to keep everyone content with creature comforts.

That might not be bad advice when you're getting ready for another year's journey in Autismland.

Wishing all of our Autismland friends and family a New Year of peace and joy, learning and loving, and witness and hope.

(And, around here, not a lot of sleep: I, as you may have gathered, need only a few hours, and I think Charlie is following suit.)

Tristate (#537)

Our Saturday began and ended at home in New Jersey.

Inbetween we drove around northern NJ in search of a gluten-free cupcake (didn't find one); got on the Turnpike to take the Holland Tunnel into New York City; got off the Turnpike on seeing traffic at a standstill all the way to the Holland Tunnel and drove into Jersey City; parked in a lot of the college I teach at, ran into the library per Charlie's "bahroom" request, and walked down Kennedy Boulevard to Journal Square; just missed the PATH train, boarded one to Hoboken that sat for several minutes and then boarded another that took us to the World Trade Center site (all while Charlie practised his rendition of "Happy Birthday!"); took various subways trains whose letters I do not remember; crossed over West Side Highway to Chelsea Piers; arrived rather late at Sweet M's birthday party!

Charlie took a seat right next to M, whose parents had more than kindly bought not one but three gluten-free cupcakes with different shades of pastel icing, which Charlie made short work of. (Mostly of the icing, I must admit.) Our travel adventure had, alas, resulted in us missing the rock-climbing part of the party; Charlie always likes a celebration and ran up and down the party room after saying his "hi's" and "t'ank oo's" to M's parents. We redonned our coats, Jim sighted Spike Lee as we headed out, then debated whether to take a taxi or walk in the wind, and the choice was made to walk. We crossed town on 23rd street, passing a seemingly block-long brick apartment building and, on the other side of the street, a small brass plaque reading St. Raphael's Verein.

"This used to be completely different," said Jim as we passed yet another fashionably-named and -customered bistro/cafe/eatery. Charlie peered into everyone: "Good thing it's a city of restaurants for you, pal!" Jim laughed.

There were two more subways (I think one was the L) to take to get to the PATH; when it emerged from a tunnel on the Jersey side it was completely dark. The wind was up in Jersey City as we hurried back down Kennedy Boulevard to the black car.

And drove on home to recollect a good day's adventure?

Well, actually............ we proceeded to drive to.................Philadelphia. (The title of this post is "Tristate.") Jim's school, Fordham University, was scheduled to play basketball against Penn at the Palestra and (more importantly) we wanted to visit our old friend Hal so down the Turnpike in the other direction we went. "Car How!" said Charlie, grinning.

As you can tell by the photo at the top of this post, we made it (despite encountering holiday traffic all the way from the Ben Franklin bridge and into central Philly, though being slowed down did enable us to get a thorough look at City Hall, gleaming white in the cold night) and got in the second half of the game. Charlie greeted Hal with the first of several bear hugs and happy grins ("How! How! How!") and looked a bit puzzled when we dropped Hal off after the game.

Traveling with Charlie, traveling to see new friends and old----I think we'd drive, or take subways trains & PATH trains, or walk, many miles more for such good times, in such great company.

A lot of help from our friends (2) (#424)

Seven years ago---just after Charlie was diagnosed with autism---we were staying at the Jersey shore for two weeks. We were in Minnesota then and the ride out was a blur of two songs we had to play again and again on the tape player (one Barney, one Celtic), and the ride back an even more painful blur of crumpled bags of food and impetigo (I had it). While we were at the beach in New Jersey, two friends came to stay the night and---after encountering a screaming Charlie running up and down the deck staring through the railings---quietly told us they could not stay. (They did, but left efficiently the next morning.)

What to say to our three friends who had come on Friday afternoon for the weekend on hearing Charlie's screams last night?

Everyone slept in. I slipped out to run and wondered what to say, and realized I should just offer my usual, inquiring explanations: The sun (despite suntan lotion, Charlie's nose and cheeks are definitely a bit pink). The ocean swimming in rough waves (body-surfing, boogie-boarding, Daddy-piggy-backing). The seafood (Charlie has been more interested in "fissh! dfisssh! eat fisssh!" then French fries on this trip). The particular wonders, and challenges, posed by New People, our three house guests, Kristina who left this morning, so many other kids.

Our three friends are "kidless" but this turned out to be in Charlie's favor. I am sure that, if any one of them had children, there would have been more stress on Charlie to interact and try to play with the other children, and that would have been one more worry for a boy already having vacation anxiety. They all got up as I was making rice for Charlie's breakfast and coffee (only for two of us---the two women, as it happened). Charlie was slowly pacing from the kitchen to the living room with a casually sweet smile. When he wandered out of earshot, I said, "Yeah, Charlie had a tough night......" and offered my hypotheses.

"Understandable," one friend noted. Then she added, "Smiling now."

Charlie had a 100% day---loving that ocean, a bit mischievous, serious and curious. Jim took him for a long morning swim while I directed our friends to a diner for brunch; Charlie did a Lego Knights puzzle; we all went to the beach in the late afternoon and Charlie swam, swam, got out and wanted a "showah" then draped himself in a towel, ran down to the ocean and in dipped the towel into the salt water. Charlie handed it to me as he ran back into the water twice, thrice, four and more times. I was careful to rinse out streams of sand from his hair.

We dined again at a picnic table in a park with the sun setting behind us. Charlie finished his meal first and ran off to the playground. Jim and I were not done yet and our friend Hal, who has gotten to know Charlie over several visits to Philadelphia, got up to watch him. "Push, swing!" I found Charlie saying to Hal when I walked over. Back at the beach house, Charlie carefully took in the sight of three friends on the chairs and couch, plus Mom and Dad and smiled more. He sat for awhile on the couch with Hal before curling up in Jim's lap, and then going up to bed and, soon, sleep.

Our guests leave on Sunday afternoon and I predict a sad Charlie. There's something about a beach house, and the ocean, that make for quietly happy moments, and great good friends.

Phillies and New Hope (#404)

April, as we Autismlanders know, is Autism Awareness Month, and so we had purchased four tickets to a special Autism Awareness Night Phillies baseball game for an evening in April.

But the game got rained out. As it was----for reasons I cannot quite recall---we were not sure we could go; April was a rather tough month with a two-week spring break from school and Charlie having the stomach flu. We flirted with the thought of not going today---90 degree heat and yesterday's biking and ocean swimming had left Charlie so drained that he spent Sunday morning lounging on his and our beds. And Charlie and the "throwed food" (to recall a certain restaurant in Missouri, in which state Charlie was born) did give Jim and me cause earlier this week to wonder if we ought not to go to the game, at the risk of explainingg about some flying French fries to Phillie fans.

Not only did we got to the game today, but we stopped in New Hope on the Delaware River on the way. We got some takeout Mexican food and the only thing that went flying was some guacamole that fell off the black car's dashboard into the white, now green accented, interior of my bag. Then we headed south to Philadelphia, with Charlie grinning more and more by the minute: "See How!" We met Charlie's pal Hal, and drove to South Philly for the game.

Charlie sat through two innings after sampling my vegan hot dog (to be had for the special price of $1.00) and then gave me a long look and pulled Hal's hand hard. "B'ack car!" Charlie went for a walk holding Jim's and Hal's hands and requesting "eat!" for some fries while I saw Pat Burrell hit a homer (the first run of the game) into left field. Charlie gave Hal a head-hug and we listened to the rest of the game while driving up Interstate 95 and the Princeton Pike (Hal stayed for the rest of the game, which ended happily for us Phillies fans).

"Yallow school bus." (I think you can guess who said that.)

"Yes, we're heading back to Grandpa's house and school tomorrow," Jim and I said. Charlie settled back into his seat, clutching his schedule strip and two spiked squishy balls. He went straight to bed after donning his "jamas" and watching me pull out the velcro-backed pictures for his Monday schedule.

And I had to be glad the baseball game had gotten rained out in April, and we had had to wait this long to have one fine Sunday in New Hope, in Philadelphia, in Autismland.

A Love Supreme (#368)

We were on the road, literally, at 7.30am today, headed for Philadelphia where I gave a presentation on teaching classical Greek and other foreign languages at the annual meeting of the American Classical League.

Jim has been noting Charlie's sitting-on-the-edge-of-the-back-seat interest to certain CDs:

Don Sugarcane Harris, blues violonist.
John Coltrane, on the saxophone.
Jimi Hendrix, on electric guitar.

This is not the music I like to listen to while driving solo (=rushing to pick up Charlie); I favor melody-driven, emotion-packed songs about the heart by female singers.

And then I hear Charlie humming "uh wub suh-peeem, uh wub suh-peeem," echoing Coltrane's "A Love Supreme."