Sunday, December 31, 2006

The Clubhouse has landed

Bud earned his final sticker at lunch today and has been playing with the Mickey Mouse Clubhouse all afternoon.

With his dinner tonight, he had bites of peas, raw carrots, celery, green beans and corn. (We've eliminated cooked carrots from the repertoire.) No gagging. No spitting. No questions. No problem.

This Clubhouse would have been a bargain at twice the price.


2006: The year in review

I lifted this idea from Jennifer over at the Childside. She seems to suggest that it's trite and cliché because "everyone" is doing it, but I guess I must not get out much - not even virtually - because it was new to me.

The idea is to produce a retrospective by posting the first sentence from the first blog post of each month. Here, then, are some glimpses back on 2006 from our corner of the blogosphere:

January: When I started this blog, I thought I would use it to write about a lot of things ("raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.")

February: When I arrived to pick up Bud from school yesterday, his eyes were a bit red and puffy.

March: I've been struggling to maintain that perspective I mentioned a couple of weeks ago, or even to find the words to write about the struggle.

April: Bud's spontaneous language just keeps getting better.

May: This weekend as we were getting ready to go outside to play, Bud approached me with his arms full of toys.

June: I was sitting at my desk when my cell phone rang.

July: There is poetry in the way Bud sees the world.

August: I've been scrambling to find a new autism specialist because the developmental pediatrician who's been working with Bud for the past four years is moving out of state.

September: I've been tagged.

October: I have followed, with interest, conversations among fellow bloggers about the use of the terms "high functioning" and "low functioning" as descriptors of autism.

November: I've never been a huge fan of Halloween before, but I have to admit - this year's festivities have left me feeling positively Wiccan.

December: As I've mentioned previously, it's officially Christmas season at our house.

Happy New Year to all my fellow travelers in the autism blogosphere. I look forward to sharing 2007 with you!

Friday, December 29, 2006

Veggie tales

We had a wonderful Christmas. Bud woke us early, but not too early, and made his way downstairs, excited but not frenzied. He read the tags before he opened each present, and he was delighted with each gift he opened. He got lots of things he loved - a Fisher Price camera, a new mini-trampoline, a "banana farm" that grows real bananas, a bevy of Curious George books and toys - but his favorite present was a low-tech stuffed Roly Mo, a BBC character he knows from the CBeebies website. (He quickly recruited several of his stuffed Boohbahs to play the roles of Roly Mo's friends.) I waited all day for the Holiday Letdown, the big crash of emotion that tends to follow holidays with big build-ups, but it never came. Bud stayed upbeat and well-regulated all day.

As the day wound down, Bud opened the Mickey Mouse Clubhouse DVD that Santa had tossed in his bag as a last minute add-on. (Santa had heard a rumor that Bud developed an intense Mickey Mouse fascination after all the Christmas shopping was done.) Inside the DVD case, Bud found an advertisement for the Mickey Mouse Clubhouse toy - a replica of the house from the show, complete with all of his newly-beloved character friends (in other words, EXACTLY the sort of toy that Bud loves best of all) - and Bud realized that he'd missed his opportunity to request the toy from Santa. Calmly, he brought the ad to me and said, "I want this for my birthday."

As the evening wore on, Bud must have done the math and realized he'd be in for a long wait for his September birthday. He called me from his bed long after I thought he was asleep, and asked, "Mama, can I have a sticker chart?"

Sticker charts are a technique we've used as an incentive for Bud to do things that are difficult - going to sleep by himself, remembering to use the toilet, swallowing pills. Bud earns a sticker each time he successfully completes the designated task, and after a predetermined number of stickers he earns a much-coveted prize. Bud desperately wanted the Mickey Mouse Clubhouse without waiting until his birthday, and he guessed that a sticker chart would be the most likely route to getting it.

I told Bud that we'd talk about it in the morning, then set about considering our options. Bud's motivation for this toy would be high, and I knew it provided an opportunity to work on a particularly daunting challenge. Two things came to mind: nighttime pull-ups and vegetables.

I ruled out pull-ups after only a few minutes' consideration. We use sticker charts for behaviors over which Bud has control. Sticker charts allow him to make choices - do the thing and get a sticker, or don't do the thing right now with the knowledge that you can do it and get a sticker some other time. No pressure. Low stakes. All in your own time. But I'm not sure that staying dry at night is a choice that Bud would be able to make, even if he wanted to. Lots of seven-year-olds - even those without autism - use pull-ups at night. Bud may not be biologically ready yet, and I didn't want to risk setting him up for failure or, perhaps worse, making him feel self-conscious or ashamed.

So veggies it was. Bud has always been good about eating vegetables, as long as they're pureed and in a jar marked "Gerbers." He likes the taste of vegetables, but he balks at chunks of them. Maybe it's the texture. Maybe it's just the idea. Either way, Bud has refused to let a solid vegetable pass his lips for years.

In the morning, when Bud asked again about a sticker chart, I pitched the vegetable idea - and, eager to do whatever it took, Bud signed on happily. We put together a sticker chart with 32 boxes for stickers followed by a picture of the Mickey Mouse Clubhouse, and we hung it on the refrigerator.

At lunchtime, when it was time to start trying to earn stickers, Bud balked again. I'd started with green beans - one of his favorites - but he could barely get past licking them. He finally choked one down by tossing it back with milk, like he was swallowing a pill, then suggested that we start with celery instead. He munched a celery stalk and a raw carrot (I have a hunch he's been eating these at school), and earned three stickers - one for each kind of veggie he'd eaten. We were off to a good start.

At dinner, it was time to try again, but Bud was in the mood for negotiation. He would eat a vegetable, he said, if he could have ALL of his stickers in exchange for it. He whined and wheedled, but I stayed firm as the veggies on his plate grew cold. Finally, he tried another green bean, and he gagged.

Maybe this is too much for him, I thought. Maybe he really can't do this.

I suggested to Bud that for this sticker he could go back to baby food, but that he would need to feed himself. (Another veggie quirk of Bud's is that, although he feeds himself everything else, he will only eat his pureed veggies if they are fed to him - but then he eats them happily.)

Bud sat at the table with his pureed green beans untouched in front of him as he continued to negotiate and complain ("How about cake? Cake could be vegetables!"). Slowly, the rest of the dinner dishes were cleared and Bud wandered away from the table. The green beans sat cold and menacing like something out of a scene in Mommy Dearest. I picked them up and told Bud that dinner was over, and that he could try again tomorrow.

And then, the post-Christmas crash I'd been expecting the previous day descended on Bud as he wailed and cried and shouted and, finally, dissolved. I hustled him into his pajamas and he fell into bed, dejected and discouraged.

"It's okay, Bud," I said. "You don't have to worry. You'll get all the stickers. We'll do it together."

"You will take care of me, Mama?"

"Of course I will."

"It will be okay?"

"It will be okay. I promise. But now it's sleeping time. Do you want me to read a book to you?"

"I just want mumblemumblemumble..."

"What's that, Bud?"

"I just want you to be my friend."

"Oh, sweetie," I said, climbing up beside him, "I am always your friend." Bud slid over and put his head on my chest. I clicked off the light, and he fell into a deep sleep.

The next morning, I woke to Bud's calm, clear voice in my ear: "Mama, may I try again?"

I assured him he could try again - and try he has. We're keeping the portions small. We're celebrating the small successes. We're working through a few gags here and there. He's spit out a mouthful or two. But he's eaten corn, carrots (raw and cooked), celery, peas, and even green beans. He's earned seventeen stickers and one big sense of accomplishment. The Fed Ex truck should deliver the Clubhouse tomorrow, right about the time we're posting sticker number 32.

Maybe we'll celebrate with some broccoli.

Sunday, December 24, 2006

Santa Bud

Bud's festival of giving continues.

Yesterday I took him to the local pharmacy, which is a "catch all" kind of store that meets the needs of residents who aren't up to making the 40-minute drive to a box store, so that he could buy Christmas presents for Daddy, Nana, and Papa. I wasn't sure what to expect, but imagined that he'd head straight to the toy department to choose things that both he and his recipients might enjoy.

He didn't.

In fact, he never stepped foot in the toy department. He walked through areas of the store he'd never visited, picking things up, looking them over, and putting them back down. He made his decisions carefully, but decisively, declaring "This one is for Daddy!" or "Nana's going to love this."

We went home and wrapped the presents together, then he took them one by one to place them under the tree, where they stayed for about three hours, until he could stand it no longer and started delivering them to their recipients. We all gathered in the kitchen for the grand unveiling, in which Daddy got heart-shaped soap, Nana got a Christmas-tree shaped tube of shower gel, and Papa got a Christmas platter.

Bud's enthusiasm grew with each present that was opened, and with each shriek of delight that he heard. He hopped up and down, clapping his hands and laughing as we gushed over each present in turn. Then he ran to get two more presents, one for Daddy and one for me, that he'd made at school.

Dad got a lovely covered dish, and I got a book, written by Bud and bound in hardcover. It instantly became my most treasured possession, and once I have access to a scanner and can do it some sort of justice, I will share it with all of you.

Bud wanted to keep the good feelings going for as long as he could, and if one of us set down our gift he scurried over to hand it back to us. He suddenly realized that he was the only one among us without a present, so he dashed over to the kitchen counter, grabbed a gift bag, and tossed in the nearest item he could find: a bottle of Triaminic cough syrup. Then, with his own gift in hand, he joined us in the middle of the kitchen for a celebration of the spirit of Christmas, pulling us all together in a five-way hug.

It was a Christmas moment that will stay with me forever. The shower gel, the platter, the soap, the box, the book - even the cough syrup - are wonderful gifts. But, without question, the warmth and love that filled our kitchen because of them were reminders to each of us that Bud himself is the best gift of all.

Friday, December 22, 2006

Christmas present

Santa won't arrive for several more days, but I've already gotten the best Christmas gifts ever.

Yesterday I attended the first grade holiday concert at Bud's school. I was nervous, because the last school event I attended was the Kindergarten end-of-the-year celebration, which did not go as well as we'd hoped. The first grade event was much more grandiose, with children from four first-grade classrooms crowded on a stage, facing rows of smiling parents in the school's multipurpose room. I reminded myself of the lessons I'd learned last year, and tried to have realistic expectations about it. Daddy, Nana, and Papa stayed away, so as not to overwhelm our boy with too many people out of context. I left the camera at home, so Bud would feel less "on the spot." And I gave Bud several opportunities to let me know he'd like me to stay away as well, and let him have only "school people" at his school event. He assured me that he wanted me to come - though I had strict instructions that I was to JUST WATCH, and not sing along.

I arrived early and found a seat that was close (but not too close) and on the aisle in case I needed to make a quick exit. Once the parents were settled, three first grade classes - all but Bud's - filed in and found their places on stage. My mind briefly flashed to an image of frantic teachers delayed because they were trying to calm a hysterical Bud, but moments later his class rounded the corner into the room. His teacher looked breezy and carefree, and by her side was Bud, smiling, wearing his sound-blocking headphones rigged up with paper reindeer antlers. His aide pointed me out in the audience, and he dashed over for a hug. I wondered if he'd refuse to leave once he was with me, but he happily followed his aide to join the rest of his class on stage, where he waved and smiled and winked at me.

It was a lovely program. Each class sang two songs, then the entire ensemble sang a song together. Bud stayed on stage for the entire production. He didn't sing, but he listened, and conducted, and tapped sticks in perfect syncopation with the rest of his class. He didn't sit, as the other children did, but he stood to the side by his classmates, in a spot that gave him a good view of the other singers, a good view of me, and easy access to his teacher whenever he needed a hug. It was a resounding success.

At the conclusion of the program, we went back to Bud's classroom for juice and cookies. A mom I'd never met before stopped to tell me that her daughter Lily is very fond of Bud and "talks about him all the time." She said Lily had made him a Christmas present and would bring it to school the next day.

When Bud and I arrived at the classroom the following morning, Lily and her dad were waiting for us. Lily's dad suggested that Bud open his present so that I could take it home to make sure it didn't get broken. I helped Bud open a lovely glass ornament on which Lily had painted a snowman's face, and as the other children in the class gathered around to see it, I realized that Lily hadn't made an ornament for all of her friends. She'd only made one for Bud.


Bud was a bit overwhelmed by the hubbub and the break in routine, and was too distracted to take a long look at the ornament, but he did give Lily a prompted "thank you." I told Lily's dad how moved I was by her thoughtfulness and he replied, "Lily was really excited about making it for him." My heart soared.

Last night, Bud was delighted when I suggested that he write a thank-you note to Lily. I told him he could use the computer to write it, hoping that if he didn't have to struggle through handwriting he might write a lengthier note. My plan worked, and without any help from me, Bud wrote:

Dear Lily thank you for this presint
And thank you to Wow I seid
Oh no seid Lily
Msis PrGER luv his frend
Good frends seid Msis Prker
Luv bud

Which translates to:

Dear Lily,
Thank you for this present. And thank you, too!
"Wow," I said.
"Oh no," said Lily.
Mrs. Parker love his friend.
"Good friends," said Mrs. Parker.
Love, Bud.

Last night before bed, Bud and I prepared the packages he'd be taking with him for his last day of school before the holiday break: a tin of homemade cookies for his class party, cards and treat bags for his teachers and the special ed staff, and a large supply of Christmas crackers to share with all his friends at school. Bud was so caught up in the spirit of the season that he climbed out of bed before me, rustled around for a while, then burst into my room shouting "Get up, Mama! It's Christmas! It's presents downstairs!"

"No, Bud," I said. "It's not Christmas yet. It's a school day, remember? It won't be Christmas for a few more days."

"No," he corrected me. "It's me, Bud, give presents for you!"

Intrigued, I made my way downstairs to discover that he'd snuck down before I was out of bed, filled my stocking with items from around the house (spoons, a note card, one of his shirts), and placed a few treasures (a beach ball, a stuffed character) under the tree.

"Merry Christmas!" he shouted.

Yes. Merry Christmas.

The very, very merriest.

Tuesday, December 19, 2006

New kid on the blog

Nat Batchleder is Susan Senator's eldest son. He's 17 years old and he is autistic.

He is also the author of my favorite new blog.

Susan writes more about the blog here, and more about Nat here.

Monday, December 18, 2006

All you need for a bedtime

A holiday, winter day, warm and cozy recommendation for a really great bedtime story for the picture book set:

Alice Schertle's All You Need for a Snowman.

It's a simple little story about building a snowfriend, but the rhythm and the meter are pure music. It is a delight to read out loud and, based on Bud's reaction, also a delight to hear.

It's absolutely all you need.

Taste of the season

Another one for the "not even wrong" file:

Last night, Bud and I were putting together treat bags for his teachers, and he asked if he could eat a piece of candy. He chose a Nestles Crunch bell - something he'd never tried before. He bit in, and his face registered surprise that the candy did not have the smooth, creamy texture he has come to associate with chocolate.

"Mmmmm," he said with a far-away look in his eye, as he thought about the other crispy-coated food he enjoys. "It's just like chocolate chicken."

Thursday, December 14, 2006

Christmas tags

Susan Senator has tagged me to do a delightful seasonal meme, and since I enjoy compiling lists as much as Nick Hornby and enjoy Christmas music as much as Santa's elves, this one is a natural for me: Name your top five holiday songs, and explain why you chose them. I actually had a hard time narrowing down the list, so I decided that instead of thinking of favorite Christmas carols (I love 'em all), I'd think about specific recordings that I look forward to hearing every year. Here's what I've got:

1. "Little Drummer Boy/Peace on Earth" by David Bowie and Bing Crosby
I'm actually not a huge fan of "Little Drummer Boy" as a stand-alone, but couple it with the beautiful counter-melody of "Peace on Earth" and it slays me every time. The Bowie/Crosby pairing is pure genius, though I can't imagine the tv executives (the song originally appeared in a 1977 Bing Crosby television special) who sat around a table and thought "You know who'd make a great duet?" Maybe it's the juxtaposition of the two that makes it work so well, I don't know - but it's like last year's Grammy's mash-up that melded Paul McCartney with Jay-Z and Linkin Park. Only more so. With bells on.

2. "Wonderful Christmastime" by Paul McCartney
If you're a regular reader of this blog, you know that this is a no-brainer.
Q: What's better than a Christmas song?
A: A Christmas song written and performed by Palmer Cartney.

3. "Christmas Waltz" by Frank Sinatra
I actually had to look up the title of this one, but it's the one that goes "Frosted window panes, candles gleaming inside. Painted candy canes on the tree. Santa's on his way; he's filled his sleigh with things - things for you and for me." I guess the bit about "this song of mine in three-quarter time" should have been a clue. I just think it's delightful, whatever it's called.

4. "Sleigh Ride"
I love most versions of this song, as long as they are performed in a straightforward way. I am profoundly uninterested in show-off performers adding runs and trills and odd syncopation to my Christmas standards, making it completely impossible to sing along. I am a "Sleigh Ride" purist, and prefer the song played loud when I am alone in the car.

I should mention that the definitive recording of the song for me, which I haven't actually heard in years, was the one that appeared on the Christmas compilation LP we owned when I was a child. I seem to recall that it was a gas station give-away - a free-with-a-fill-up sort of promotion - and it included a version of "Sleigh Ride" by Steve Lawrence and Eydie Gorme. Now that was a sing-along good time.

5. "Fairytale of New York" by The Pogues
Okay, I'll grant you, this is not your typical warm and fuzzy, Currier and Ives, chestnuts-roasting-on-an-open-fire kind of tune. It's more the seamy underbelly of the Christmas season, with Shane MacGowan's opening stanza slurred out with a scowl:

It was Christmas Eve, babe,
In the drunk tank.
An old man said to me,
"Won't see another one."
And then he sang a song,
A rare old mountain tune.
I turned my face away,
And dreamed about you.

Kirsty MacColl joins MacGowan in a duet that Wikipedia describes as the story of "two Irish immigrants, lovers or ex-lovers, their youthful hopes all but crushed by alcoholism and drug addiction, reminiscing and bickering on Christmas Eve in New York City. " It may not sound like the stuff of which tradition is made, but trust me - not a Christmas goes by without my husband and me crooning to each other:

You scumbag, you maggot,
You cheap lousy f****t,
Happy Christmas your arse,
I pray God it's our last.

Except we sing it with love.

Now it's your turn: post your top five in the comments section, or leave a comment directing us to your blog.

Saturday, December 09, 2006

George and Sam hit the States

George and Sam, Charlotte Moore's memoir of life as a single mother of three sons, two of who have autism, has finally been published in the U.S. As Kristina reports on AutismVox, there was a less-than-flattering review of it in the Washington Post on Friday.

I had a different take on the book when I read it last year.

Wednesday, December 06, 2006

Curious George, the sequel

Elsewhere on this blog, discriminating aficionados of art and literature will find a series of Curious George illustrations that have received a great deal of critical acclaim. This week I learned that there were several additional pieces tucked in Bud's backpack that had never before been released to the public.

Here, then, are the recently-discovered lost works from the master himself:

George is a monkey, so he can do things that you can'ts do.
He had an umbrella.

George is a monkey, so he can do things you can'ts do.
Well, he ate a zero and he changed numbers to thousands to one hundred.

Well, he's a monkey so he can do things you can'ts do.
George and his friends rolled down really fast.

George is a monkey, so he can do things you can'ts do.
He was taking all the sounds for the animals were making.

The end?

Sunday, December 03, 2006

Der santu

As I've mentioned previously, it's officially Christmas season at our house. Now that it's December, the real countdown has begun with the opening of a box a day on our Playmobil Advent calendar, and like many children at this time of year, Bud always has today's date right on the tip of his tongue.

I'd been planning on easing into the season, to downplay the merriment and put off the decorations until mid-month, but the fact is that I'm just as big a sucker for the holiday as Bud is. Yesterday, Bud suggested that it was time to get a tree. It didn't take much convincing for him to get Papa and me bundled into the car to head off to make the Big Purchase, and now a brilliant, twinkling Christmas tree stands in a prominent position in the living room. Bud woke early this morning - not as early as some mornings, I'll grant you, but 3:00 a.m. nonetheless - not asking for breakfast, not asking to turn on the television, but simply requesting that we head downstairs to watch the tree. It promises to be a long month, but a lovely one.

Bud also took some time yesterday to compose a letter to Santa. Unlike last year, when Bud dictated his letter to me, this year he wrote it all by himself. It reads:

Der santu

Wut did you brin to me
I wot a move a toy a bawse house kshrls

Kpydr game by Bud and sumbh and mom
Dad nana puupu pbskids nosze game
Curious gorgre toy


Or, for those less fluent in Bud:

Dear Santa,

What did you bring to me?
I want a movie, a toy, a bouncy house, controls.

Computer game. By Bud and
Sumbah and Mom,
Dad, Nana, Papa
. PBS Kids, noisy game,
Curious George toy.

Oh, okay, I helped him with the "Curious." But the rest was pure Bud.

We're off to the mailbox today to send the letter off to the North Pole. Incidentally, we're not including the translation in the copy we're sending. I have it on good authority that Santa can read Bud just fine.