We Go With Him

Icing Off the Cake

Monday I had (not too serious) modem trouble; we also had (kind of extra serious) car trouble. Jim and I both had the day off from teaching as it was Indigenous Peoples Day/Columbus Day (I really did grow up right in the vicinity of Berkeley, CA, and was far more likely to hear about the former). Our New Jersey school district seems to be one of the few for whom the day (whatever it is called) is not a holiday. So while Charlie was at school and Jim was hearing the bad news about the black car, I gave our apartment a very thorough cleaning and sorted through piles of puzzles and bins of flashcards and plastic stimuli in Charlie's room.

I hadn't really gone through much of these since we moved into the apartment back in September of 2007. I shuffled through a dusty bin of alphabet flashcards and old Ziplocs filled with plastic colored cubes and stubby crayons from the days when we tried to get Charlie to color. I made a huge tower of Ravensburger puzzles: Up until he was about 9, Charlie was always drawn to puzzles and relatives and friends generously sent us lots. (Anyone need some puzzles, 60 pieces, 100 pieces, very gently--if that---used? I'm planning a giveaway.) "Receptive by feature function and class," "skip counting,"  the "reading/writing board," "block design": The names of one program after another came into my mind. I stacked up several binders crammed with datasheets. I found a folder with a song that Charlie's old piano teacher had given us at his last lesson a couple of years ago, and that Charlie has yet to play.

Books appeared under the puzzle boxes or wedged behind a shelf. Tar Beach, Harold and His Purple Crayon, Richard Scarry's Best Word Book Ever, My Very First Mother Goose, The Giant Ball of String, each read to Charlie countless times as he bounced in his chair and tried to identify the letters we pointed to. I stacked these up and placed them altogether in one spot. I've given a few board and picture books to my cousin whose daughter will be a year old this winter. Though Charlie has yet to read any book---has yet to read a phrase, much less a sentence---each book comes with lots of memories of our efforts trying to teach him; comes with the traces still of the magic allure books have always held for me. (When I was a child, my parents told my sister and me, we could always get books; toys, though, were limited to special occasions.)

Charlie has not "mastered" many of the things we and his many teachers and therapists over the past ten years set out to teach him. He's tried very hard and we all have, too. But some things just take him really really long to learn (I remain a person who has a really really hard time giving up.)

While yesterday I really wondered (and still am) about how much "progress" has occurred in understanding autism and autistic individuals, I regularly chart the small sparks of learning and growth in Charlie. Yesterday this was measured in.........frosting.

After spending the better part of the day dealing with the car issue, Jim went to his office to grade student essays. Charlie and I stopped at the grocery store. In the past, going grocery shopping meant we had to get certain items, meant getting two jars of relish even if we already had three at home. Over the past year, we've more and more been able to explain to Charlie that (as was the case yesterday) we don't need to get more watermelon as we have some at home in the fridge; that we don't always have to get exactly the same items at the store. Charlie wanted to get brownie mix and paused when I reminded him about the pan of brownies sitting on the counter at home. "White," he said and looked wistfully at the containers of premade frosting.

I said "no we don't need that" a couple of times. Then I said "we can get it if you have just a little and we save most of it."

Deal.

Some frosting was indeed all that Charlie licked up with a spoon as I portioned out the rest into several little plastic containers. In fact, he left a good dollop untouched and I was reminded of forbidden fruit syndrome: The secret to making something less desirable is by saying "ok fine, just eat it."

Sure Charlie never "mastered" all those programs in the stack of binders. But there's many an unwritten program that he has indeed gotten. Success (especially when you didn't realize it'd been attained) can be so very, very sweet.

Play It Again, Barney! (#524)

Duhn duh dah, duhn duh dah, duhn duh dah der da der dah; dah der, da da da dader deh dah da der daaaaaa.......... deh der da der deh dah do.

Words cannot convey the tune I have stuck in my head after hearing Charlie pick out a brand new song on the keyboard during his piano lesson today. His teacher makes all of the materials, from a special board to teach Charlie to identify notes on the grand staff to the sheet music; as Charlie is a very beginning reader of words, each song is identified by a picture. I just glimpsed an image of someone playing a guitar atop the new song and so did not know what it was until I heard Charlie sight-read it.

Duhn duh dah, duhn duh dah.

The image of a purple dinosaur, green-bellied and yellow-toed, was swaying in my mind, rows of smiling, singing children on either side of him..... It was the "I Love You" song or rather (before Barney and Co. co-opted it) "This Old Man." I glanced at Charlie who was busy reading the notes, with a certain pull to his mouth.

My parents gave Charlie a "says 100 things" Barney for his first birthday and that battery-powered fleecey stuffed dinosaur, and his much larger incarnation on videos, was Charlie's constant companion for years. Toddler Charlie's fingers were not strong enough to press Barney's hand so he would say one of those 100 things ("what sound does a cow make?") and it was a great day (or rather a sign of how far Charlie, not yet diagnosed with autism, had then to go) when we heard Barney talking without our assistance, and found Charlie biting on Barney's increasingly soggy hand. Barney occupied the spot between the wall and Charlie's pillow at night; Barney, and a toy computer named Alphabert, were the two beings Charlie took with him, one in each hand, when he decided to walk down the street a block or two on his own (without, of course, informing us of this decision). For some time, Charlie appropriated a laptop case of Jim's, the better to carry around his prized possessions.

All the while, Charlie (and Jim and I) watched a steady diet of some seven videos---"Shapes and Colors" was Charlie's particular favorite---and I can still burst into "Hey Mr. Knickerbocker" and "Oh we are flying in an airplane" at any moment. The "I Love You" song and the music, sweet as Valentine's candy, is permanently etched into my brain cells and, I suspect, into Charlie's too: What was it like for him to play that song, with its 100-plus associations, today?

Because we don't have Barney anymore, or any of the videos, all gone before we could make the move into DVDs. Sometime when he was six or seven years old, playing with Barney, watching a minute of Barney, became the prelude to head-banging. Charlie would just have poked the white plastic rectangle into the VCR and sat down to watch, and then there he was knocking his forehead on the hardwood floor and crying. It happened once, it kept happening, and may I be called Mala Mater, but Barney and those videos all ended up in the garbage, amid tears and screeches and doubt.

I now am understanding that something about the purple dinosaur had, perhaps, an over-stimulating effect on Charlie. It has only been in the past several months that we have been able to behold racks of Barney videos, DVDs, CDs, and merchandise and look at it all and just walk away. Trips to Target and, indeed, any store where something Barney might lurk had become laden with anxiety as we (Charlie included) knew he would have to go to see if the store had anything Barney, and then that he would have to wrench himself away from it. Now there is something much less tense, a bit freer, to Charlie's demeanor when we go into stores and, indeed into people's houses, free of the need to desperately seek Barney.

I am looking forward to hearing Charlie play the old familiar song tomorrow.

I love you, you love me, we're a happy fa--mi--ly......