Saturday, December 20, 2008

All I want for Christmas

Bud had an appointment this week with the medical team he sees for medication management. We started seeing them about a year ago, in the midst of a very difficult time for Bud, and those early visits were incredibly stressful - wild displays of dysregulation filled with heart-pounding public tantrums and meltdowns in the waiting room, the hallway, the office.

Flash forward one year and the scene is very different. This time, Bud stood patiently next to me as I waited to check in at the counter. The two receptionists greeted us and Bud responded with a cheerful "Happy holidays!" They asked how he was and he said he was doing great. They asked what Santa would bring him this year, and he said he'd just like to be surprised. Then he took out his Dragon Tales toys and sat down to wait for me to finish up.

"Wow!" one receptionist said to me, softly enough that Bud couldn't hear. "He never talks to us!"

"I know," I said, beaming. "He's really doing great."

"He's like a different child from the one who started coming here," she answered.

Bud stayed conversational throughout the visit, answering all of the doctor's questions: school was good, he said. Ms. Brett was his best friend there. Kelly was his best kid friend. Sometimes he still got worried going to school, but just a little worried. He was looking forward to Christmas.

The doctor asked about our Christmas tree, and I told her that Bud hung all of the ornaments on it.

"Do you have a favorite ornament?" she asked him.

"Yes!" Bud asked enthusiastically.

"Which one is your favorite?" she asked.

"The heart!" he chirped, his eyes gleaming. I mentally scanned our tree, trying to remember the heart-shaped ornament he was talking about. Our tree has a wild assortment of ornaments - from cut-glass kangaroos to macaroni angels - but I couldn't think of a single heart.

"Which one is the heart?" I asked him, puzzled.

He turned to me and smiled, "The heart for Mom! With my picture on it!"

And then it clicked.

"Bud, did you make me a heart ornament at school?"

"YES!" he squealed.

"Oh, wow!" I gushed. "Is it a surprise?"

"YES!" he shrieked. "It's a SURPRISE!"

And yesterday, in Bud's backpack, I found a present wrapped in tissue paper. Bud told me that I shouldn't wait for Christmas, but should open it on the spot.

It was heart-shaped ornament, hand-colored, with a picture of Bud in the middle. We rearranged ornaments to hang it right in the center of the tree, and the delight of gift-giving set Bud off in a flurry of preparations for a family Christmas of his own making.

Before bed last night, Bud crept around the house gathering up toys and trinkets. He filled up stockings for Nana, Papa, and me - as well as for himself. This morning, I was awoken by his face in mine: "Mama, I need scissors."

"For what, Bud?" I asked, groggily.

"For the wrapping paper. In the playroom."

"What are you wrapping, hon?"

"A present for Nana."

When he had everything ready, he woke us all up and one by one we each opened our Bud-filled stockings and marvelled at the treasures inside. Bud got a teddy bear. I got a Fisher Price camera. Nana got a race car. Papa got a set of chattering teeth. By the time we finished opening our presents, Bud was bursting with excitement and pride for orchestrating such a magical morning.

I think I've already gotten everything I want for Christmas.

Wednesday, December 17, 2008

Extra catch up

After a month of living off the grid, I'm not even sure how to re-emerge into the blogosphere. I've always thought that once a blogger starts beginning posts with phrases like "Wow, I can't believe how long it's been since I've written," it's a sure sign that the blog has jumped the shark.

I gotta admit, I can see the fins circling.

It's funny how it happens, though. It starts with "Oh, this will make a good post. I'll just set that idea aside until I have time to flesh it out," then it morphs into "Maybe I can blend this story with the other one and just have a longer post," which soon becomes, "Okay, I'll just scrap those two and start fresh with this one," and suddenly a post-free month passes and I begin to think that maybe I should just pack it all in and go low-tech.

But here I am in my Fonzie finest, life jacket in place and fingers flying on the keyboard, in a (perhaps futile) attempt to salvage the ratings. And yet, I'm not quite sure where to begin, and if I really try to fill in all the gaps since the last time I wrote, this post will inevitably end up in the dead letter of office of half-written drafts.

So I will begin here:

I've been thinking a lot about how Bud's language has progressed, and about how sophisticated his use of mitigated echolalia has become (as, I might add, Barry Prizant predicted years ago). Bud has an enormous store of phrases and sentences filed in his brain and he's able to retrieve them in an instant, mentally flipping through to find the phrase or quote or snippet of language that most closely fits the real-life situation in which he finds himself. He is so skilled with it, in fact, that unless you know he's using scripts, you wouldn't know he's using scripts. Most people have brief conversations with him in passing and simply think his language is a little quirky.

A favorite recent example:

Bud was sick back in October - nothing serious, but it required a trip to the doctor. At the time, he was geared up to be a doctor for Halloween, so in preparation for his visit he donned his white lab coat, strapped on his head mirror, wrapped his stethoscope around his neck, and pulled a face mask over his mouth. He walked through the medical center with an air of authority and, to a person, the staff and nurses he met treated him with solemn respect: "Hello, Doctor. We're glad you've come to help us today." Bud nodded at them, told them they were welcome, and, through the use of doctor-visit scripts from Elmo and Blues Clues, generally reassured them that he was happy to be on the job.

We got into the exam room and Bud climbed up on the table as Nurse Dan walked into the room. "Hello again, Bud," he greeted us. "I see you you've become a doctor since the last time I saw you!"

"Well," Bud replied matter-of-factly, "I've gotta make a living somehow, you know."

"I hear you, Bud," Nurse Dan commiserated. "Don't we all."

"Yeah," Bud agreed. "Don't we all."

And there you have it. A quick little vignette from my life with Bud to get me started on what I hope will be a roll of more frequent posting.

I've gotta start blogging somewhere, you know.