Sunday, April 30, 2006

My beautiful balloons

Latex balloons often make me think about the challenges of parenting a child with special needs, because they were one of the first indicators - very early on in my parenting journey - that there are an extraordinary number of fine points and details that parents of children with disabilities have to consider and plan carefully, that most other parents have the luxury of taking for granted.

Several years ago, when I learned that I was carrying a child with spina bifida I tried to learn as much as I could about what my child's life would be like. I learned many things that, while difficult, were not surprising. But the first real surprise I got came in the form of balloons. Many people with spina bifida have extreme latex allergies, and for that reason it is recommended that parents of children with spina bifida keep latex away from their children from the start. (Our twins were delivered in a latex-free OR, and Bud and I stayed in a latex-free hospital room, despite the fact that, by then, it was no longer necessary.) Latex is in a lot of products new parents use every day - baby bottle nipples and pacifiers, diapers, rubber toys; it is also in balloons. Balloons - the colorful carefree symbol of childhood - could have been deadly to my children. Perhaps because the big picture was too overwhelming I found myself obsessing on this detail in both of my spina bifida pregnancies.

But my obsession was short-lived, and those sweet babies are not with us. Shortly after we lost each of them my husband and I wrote messages on balloons and let them go, watching them drift high into the sky, in the hopes that our babies, no longer concerned about allergy or disability, would catch them.

Perhaps in a bit of cosmic homage to his siblings, Bud is a balloon enthusiast. Latex, mylar, helium-filled or blown from the lungs - he loves them all. On any given day you can probably find a balloon somewhere in our house - a withered balloon tumble-weeding it's away around the living room, a wayward mylar balloon clinging to the rafters for weeks on end, a soggy-with-spit blob of deflated latex that Bud has been practicing with. So this morning when we went to the grocery store to buy the fixings for Daddy's special birthday dinner and Bud saw that the store was giving away balloons with their logo, he marched bravely to customer service and asked for one. When the woman at the counter discovered it was Daddy's birthday, she gave him a second one to take home to Dad.

Bud held tightly to his balloons through the check-out and across the parking lot, then let them roam free in the car. One made it's way to the front and brushed my cheek while I drove, and I began thinking about our lost babies and our long and complicated history with balloons. When we got home, Bud raced in to show the balloons to Daddy, and we quickly tied each one to a lightweight plastic balloon anchor - heavy enough to keep them from flying away, light enough to let them bounce along, barely skimming the ground.

All day long, the balloons caught my attention. Bud brought them outside with us, and they hovered as we ate our lunch at the picnic table. When we moved to the other side of the house to rake leaves and stack branches, they bobbed around the corner to find us. They joined us as we played catch with the big orange ball, and as Bud sounded out, then copied in writing, the words I wrote in chalk on the driveway: hat, can, big, sun, zip.

Over and over, the balloons made me smile. They weren't connected to each other but they stayed together, propelled by the same invisible breezes. They looked like they were putting their heads together, comparing notes and sharing secrets. They made me think of my babies, and I was happy to have them along.

When we finally moved indoors, Bud went upstairs with Dad to play on the computer and I headed to the kitchen to prepare the birthday feast. As I cooked, the balloons floated through together, paused for a while, then continued on their way. I wondered briefly if they'd come to the party, then quickly got back to the business at hand.

After a great dinner it was time for cake and presents. As I got the cake ready, Bud ran into the kitchen and opened the drawer where we keep the aluminum foil.

"I need some help," he said.

In his hand, he held a plastic purple star that he painted several years ago in preschool and that has been hanging in his room ever since. He wanted to wrap it to give it to his dad for his birthday. I tore a sheet of foil, and Bud wrapped the present tightly and asked for a bow. He stuck one on, then shook with glee as he presented the gift and watched Daddy gush over it.

Then it was time for cake. We sang the conga-line version of the song (HAP-py-birth-day-dad-DY!"), as has become the family tradition, and Bud "helped" Daddy blow out his many candles. I turned to get Dad's other presents, and when I looked back I saw that Bud had taken his two balloons and was balancing the balloon-anchors on the top of his dad's head. The anchors slipped down, and Dad wrapped one balloon string under each arm. He finished opening his presents with one balloon bouncing against each ear, and Bud dancing with giddiness at the sight. My heart has never felt more full.

We spent the rest of the festivities watching Bud put treasured possessions into the bed of a big inflatable shoe, then present them to his Dad as additional birthday presents to "open": among other things, Bud's favorite toothpaste, his rubber duck, a Blues Clues video, and - the piece de resistance - a Teletubbies CD. I'm not sure if Daddy was more pleased to get them or Bud was more pleased to give them. Bud rounded out the evening by eating two bites of birthday cake - the actual cake, not just the frosting. It may not sound like much, but it is the first cake I have seen my six-year-old eat since the piece he had on his first birthday.

Bathtime and bedtime went smoothly, all of us happily exhausted by a day full of sunshine, fresh air, presents and parties. The balloons, too, are starting to deflate. They are still hovering by the table, but are closer to the ground now, their helium spirit making a quiet exit after a busy day.

That's the thing about helium balloons. They're not around very long, and they often leave before you're ready to see them go. But these helium balloons - these particular balloons on this particular day? I have a feeling they'll be with me for a long, long time.

'Tis the season to be sneezing

It seems that Bud might be developing allergies.

It's no surprise; his dad has always had seasonal allergies, and in recent years I have developed some as well.

Yesterday we spent a lot of time playing outside, and Bud rubbed his eyes until they were puffy. He tried to tell me how he was feeling:

"My nose is feeling sad."

"My nose is a little bit tired."

"My nose... she's feel crumbles."

Looks like it's time to get the Benadryl ready, and just wait for the sneezing to start.

Saturday, April 29, 2006

What a difference a (school) year makes


Back in October, I was dismayed when Bud came home from school with a painting of a sky and grass and a tree and a cat. But when I picked him up at school on yesterday's sunny late-April afternoon I was delighted to see this painting of two apple trees and a rainbow. This landscape is direct from Bud's imagination; he was alone at the easel while he produced it. No direction, no advice, no "helpful hints" - just the artist and his art. And he's proud of what he's created. He's told me about it several times, and each time the description has been different. Though he mentions each of the elements - the apple trees, the sky, the grass, the rainbow, the line (because that top red line is not part of the rainbow; it is simply a line, no less important to the landscape than any other element) - he talks about them in different orders, with different inflections, using different words. Sometimes they are "my trees," sometimes "two apple trees," sometimes "the beautiful apple trees." This is not a script.

It's just art.

And it's all Bud's.

Wednesday, April 26, 2006

Mr. Personality

Yesterday my mom was watching a recent Oprah show on TiVo. In the intro to the story, Oprah said that it is widely believed that personality is formed by the time a person is six years old.

Interesting.

"I wonder if that's true for children who have developmental delays," I said, thinking about our resident six-year-old.

My mom and I were quiet for a minute as we each considered the implications of the question.

"I hope so," she said.

"Me too."

Monday, April 24, 2006

Give the people what they want

This evening I was browsing through a magazine that Bud brought home from school - Parent & Child: The Learning Link Between Home And School, a monthly publication from Scholastic, apparently provided free of charge to the school district. It seemed to be the same tired and rehashed minutiae I've come to expect from parenting magazines - limit screen time, don't co-sleep with your infant, buy our great new bubble bath.

Then I got to the page titled Focus on Health, which featured three one-paragraph blurbs: the link between childhood television habits and adult obesity; the problems associated with lead paint; autism.

Oh, autism! Let's have a read...

DID YOU KNOW?
Autism is now the third most common developmental disability in the U.S. By defining early predictors, researchers hope at-risk infants and toddlers will receive the early intervention that can potentially prevent the onset of autism. Visit kennedykrieger.org for information.

Potentially prevent the onset of autism?

Are you kidding me?

Who ARE these people?

I visited Kennedy Krieger Institute's web site and learned they are "an internationally recognized facility located in Baltimore, Maryland dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training." Surprisingly, there was no banner headline on their home page instructing me to click here to find out how to potentially prevent the onset of autism. So, instead, I clicked through their autism links and got - well, autism information.

Perhaps I was looking in the wrong place.

I found the box that would allow me to search their site and typed in "prevent onset autism." My results read:

Here are your results for search: prevent onset autism
No results where return for Search


Maybe I was being too verbose.

I went back to the search box and entered "prevent autism." That yielded:

Here are your results for search: prevent autism
No results where return for Search


Apparently Kennedy Krieger loves them the bad grammar, too.

Okay, so maybe I should have entered a direct quote from the magazine. I typed in "potentially prevent the onset of autism." That got:

Here are your results for search: "potentially prevent the onset of autism"
Error: null Function: get_search{? = call get_search(?,?,?,?,?,?,?)}Unable to process search. Either retry with a different, or contact the web administrator if problem persists.


It seems the nice folks at Kennedy Krieger have had just about enough of me.

Now, I understand that this is just some give-away magazine that is mostly just advertisements posing as feature articles. I know they don't expect people to actually read it. And I get that it makes nice copy, this little blurb that implies that if you pay enough attention to your small child's development, then you can whisk him away from that pesky little autism thing you keep reading about.

But shouldn't some standard of journalistic integrity apply, even to the publishers of Parent & Child: The Learning Link Between Home and School?

I mean, shouldn't they, on some level, have to actually tell the truth?

Sunday, April 23, 2006

Give means take

More inspiration from Charlie Fisher.

In the latest post at Autismland, Kristina recounts a conversation between Charlie and his dad, Jim:

"Giff," said Charlie, handing Jim some colored balls he had been rolling around. "Give, he means take, give means take," said Jim, walking up the stairs.

In Autismland, give means take.

It really does.

On the most basic level, "give" means "take" the way "you" means "me," the way "you want juice" means "I want juice."

But it's more than that. At least it is in my corner of Autismland.

Because over here, giving Bud what he really needs means taking the time to pay attention to him, to read his cues, to notice the subtle changes.

Giving him every advantage means taking his perspective, trying to think a step ahead, and imagining how whatever it is that's coming might appear to him.

Giving Bud the time he needs and the respect he deserves means taking pride in the remarkable accomplishments he makes.

Giving him opportunities means taking risks.

Charlie's got it right. In Autismland, give means take.

Yes.

Saturday, April 22, 2006

Glimpses

Yesterday I spent my day meeting with high school seniors who will be starting college in fall, helping them choose the courses they'll take in their first semester. I love this day - the energy, the excitement, the enthusiasm - and I love the variety of students who choose to come to our small college.

My last appointment was with Rob, a bright, engaging young man who came with his dad. He's starting college without a major, but has a lot of interests he'd like to pursue - psychology, maybe; or sports management; perhaps business. He's good at math, though this year's grades wouldn't necessarily reflect that; he attributes that more to Senioritis than ability.

I looked down at the registration form he'd come in with. A note from the Registrar instructed us to schedule four classes for Rob's first semester, instead of the traditional five. I launched into a lengthy monologue about the college's liberal education requirements and the options he had. Rob listened politely, but when I stopped speaking and turned the conversation over to him I was met with silence - not awkward silence; just the sort of silence that indicated that Rob had nothing to say.

Ah.

I started over, with just the first chunk of information. And then I started to pick up on cues that made Rob more and more familiar to me. There was something about the way he looked at me as he spoke - or, more accurately, about the way he didn't look at me. Something about the cadence of his speech. Something in the subtle flick of his hand. Something that made me want to say, "Hey, Rob, I think I know you."

We tackled our task systematically, one step at a time. While Rob took some time to look over course options on his own, I chatted with his Dad.

"I wonder if you can tell me about the learning services you have here," his dad said. "Rob has ADD and - halting pause - another learning disability."

I filled in the blank on my own.

We talked about the services at the academic development center, and about the college's commitment to working with students as individuals, making the accommodations that will help them to be successful. Rob finished looking at his choices and we went back to a very successful concrete sequential scheduling session.

As I worked with Rob and his dad, I found myself wanting to ask the same question I always want to ask the students I know who are (or who appear to be) on the spectrum: "Can you tell me what you were like when you were six years old?"

But, as always, I kept my question to myself. Yesterday was Rob's day to look forward, not back. But I couldn't help looking forward myself. What will Bud be like at eighteen?

I imagine that Rob has faced a lot of obstacles as he has made his way to this place, where he is a high school senior full of promise, ready to take on college life.

I hope he doesn't spend too much of his energy dwelling on his struggle and is instead able to focus on his success.

I hope he knows that yesterday he made someone think, "I hope my son grows up to be just like you."

Wednesday, April 19, 2006

Affirmative

There seems to be a lot of negative energy in the autism blogosphere lately.

Some of it has surfaced as heated debate; some of it as the normal sadness and discouragement that we all feel occasionally, autism-related or not. Some of it has bloggers I like and respect on the defense because they're feeling personally attacked. Some of it has centered on a controversial ad campaign from the National Autism Association.

I'm starting to realize why the Tylenol Sinus pills I've been popping haven't touched the throbbing pain in my head.

But there's been wisdom in the blogs as well. One thing - one word, in fact - has gotten me thinking.

Yesterday, two different boys in two different stories on two different blogs used one single word:

"Yes."

I don't know Nat or Charlie, and I won't presume that I can deconstruct the levels of meaning in their particular messages (though my hunch is that Susan and Kristina could do it beautifully - perhaps we should add "interpreter" to the list of synonyms for "parent"). But I do know Bud, and I understand his economy of language - why use three paragraphs when three words will do? - so I believe that there was an enormous depth of meaning for them.

Their words - their word - has shaped my thinking all day.

Yes.

I want to use that word more often. To other people. And inside my own head.

I want to use it more, and I want it to mean more. I want it to shape my thinking beyond today.

I know that life is not all sunshine and roses. Charlie and Nat know that, too. But if they can do it - and they can do it - then so can I.

Yes.

Monday, April 17, 2006

Learning when to say "when"

I'm finding that making judgments about the interventions we use with Bud can be sort of like going out to eat at a fantastic restaurant: the first bite is so good and so satisfying that my brain makes the leap that if some of this is good, then more of it will be better. I dive in and begin to devour what's in front of me, and before I know it I discover that I am so full it hurts and that, in retrospect, more good has turned out to be not-so-good.

I suppose that in the midst of these feeding frenzies my body tries to send cues to my brain ("For the love of God, stop eating!"), but I am so swept up in the moment that I don't (or I choose not to) interpret the cues correctly.

I'm afraid I've done the same thing with Bud's "therapies."

Last year, Bud saw a massage therapist who did Cranio-Sacral Therapy. At first, he loved the sessions. They relaxed him, and he looked forward to them. As time passed, he began to have mixed reactions to the therapy. He had one session that was particularly intense; he was more fully engaged and "into" it than he had ever been, and because of that it was the longest session he'd ever had. Following that session, Bud did a complete turn-around. He didn't want the therapist to touch him the next week. Or the week after that. Or the week after that. I don't know if that last session was too intense, if it kicked up emotion, or if it was unsettling to him, and he didn't have the language to talk about his reaction. Each week he said he wanted to go, but then when we got to the office he'd say he wanted to leave. It took me several weeks of making attempts, giving him encouragement, and asking him for words and explanations to realize that he was telling me what he needed, but I wasn't listening.

He needed to be done.

We've just had a similar experience with Bud's occupational therapy sessions, but this time it took me even longer to get it. Bud's been having one-on-one OT sessions for more than a year, and for a long time he really enjoyed them. They helped with some of his sensory integration difficulties and helped improve his fine motor skills. But in recent months, Bud has been having out-of-character reactions to his OT. He has been bossy, belligerent, defiant, stubborn, rude - in other words, none of the things that we know him to be. I spoke to his OT about it ("We never see this from him..."), but of course this was all she was seeing of him, so perhaps I sounded like a mom in denial. I chalked it up to a developmental phase, to him testing boundaries, and I convinced myself that it would pass. OT has always been good for him, I reasoned, and so of course it will continue to get better. More is better, more is better, more is better.

I'm usually at work when Bud has his OT sessions, but two weeks ago I was running late and the OT was running early and I was home to hear the session from downstairs. Bud, who had spent the morning happy and cheerful and easy-going, changed in an instant and began engaging in battle. The OT stood her ground, and the situation escalated. I stood at the bottom of the stairs with indecision rooting me to the spot.

Should I intervene? Does he need me? Will I be undermining the work that she's doing?

I started up the stairs slowly, then broke into a run as I heard Bud start to cry. I dropped down next to him on the floor and he buried his face in me and sobbed. I rocked him and whispered to him. The OT was frustrated, probably with me. I could feel her tension and aggravation as she spoke to Bud and asked if he was angry. I'm sure that he could feel it, too.

She told me that she had some information for me about mercury.

I told her I had a lot of information about mercury.

She said it was brand new research.

Bud sobbed some more, and we rocked together.

He needed to be done.

So we're taking a break from OT. Maybe a short break, maybe a permanent break. I'm upset with myself for not reading Bud's cues better and earlier, for making him continue when he was clearly ready to stop, for pushing for more, more, more instead of walking away at "just enough."

It's hard to know how much is "just enough." It's hard to walk away from a once-good thing when there is still more available. But I need to learn to recognize the signs that good has gone past better and is cycling back toward bad.

I need to learn when to say "when," and then walk away from the table with the satisfaction of moderation and good judgment instead of the pain of over-indulgence. Because let's face it: when I over-indulge, it's really Bud who feels the pain.

Saturday, April 15, 2006

Science, sequence, and celebration

I've been thinking a lot about Bud's logical, sequential, "systemizer"-type mind. I first started thinking about it this afternoon, when Bud completed his very first science experiment.

It was a test of buoyancy. Bud filled a pan with water and placed it on the counter, then wondered aloud if a lemon would sink or float. I could tell by his inflection ("Will the lemon SINK - pause - or FLOAT?") that this was a script, but I went with it.

The lemon floated.

Bud repeated his script, suggesting that we test the buoyancy of the lemon again: "Will the lemon SINK - pause - or FLOAT?"

"I wonder what else might sink or float," I said.

Bud looked around the kitchen and shouted, "A pear!"

The pear sank. And quickly started turning brown. Now it was getting interesting. Bud abandoned his script and we set out testing everything we could think of. We got two sheets of paper and (with a little help) Bud wrote "FLOAT" on one and "SINK" on the other. After we tested each item we scurried into the dining room to draw a picture of the item on the appropriate list.

Big goldfish float. So do Cheerios and walnuts.

Pasta sinks. So do baby carrots and grapes.

Pretzels float, but get really, really disgusting after a while. Or, to quote Bud, "It's very GOOEY!"

I continued to think about Bud's sequential mind after he went to sleep and I started my Easter Bunny duties. Easter took Bud by surprise this year. He's been out of school all week, so he hasn't been around other children talking about the upcoming holiday. The family members who would typically come to our house for the weekend cancelled their plans to steer clear of our illness. So the usual signs that Something Is Happening are absent, and he was startled when I told him this afternoon that tomorrow is Easter.

He is used to a build-up; he expects the agony of the wait. So he quizzed me about it for the rest of the day.

"Tomorrow is Easter?"

"When I wake up?"

"And will be eggs waiting for me?"

"Easter Bunny will hide my eggs when I'm sleeping?"

It was clear from his questions that he needed no reminders about what the flow of activity looks like on Easter. He was able to recall it all immediately. But I found it interesting that his questions focused on the eggs and not on the basket.

"Tell me about the eggs, Bud," I said.

"They're maps." he said.

Maps.

His favorite part of Easter is the maps.

Throughout my own childhood, my favorite part of Easter was the hunt for candy eggs hidden all around the house. My siblings and I would scatter in a frenzied scramble to collect as many of the foil-wrapped treasures as we could. In my memory, Easter morning is a frenetic pace and a mound of chocolate. I always imagined I would recreate the scene for my own family.

But when Bud was very young, I recognized that my idealized Easter morning would not work for him. First of all, Bud has never been all that fond of candy. A mound of chocolate would hold very little appeal to him. And second, even before Bud had a diagnosis - before I knew there was anything to diagnose - I simply couldn't imagine him engaging in a "traditional" egg hunt. I guessed that he wouldn't see the point in rushing around collecting eggs at random. My hunch was that he would not be interested in hunting, and would abandon the search quickly.

But I wanted Easter morning to be something special for him, so I tried to create an experience that I thought he would enjoy. I bought some brightly colored plastic eggs and I created an egg hunt - a concrete sequential egg hunt, in which each egg led to another egg in a predetermined order, leading him through the house and, ultimately, to his Easter basket filled with little toys and treats. That first year, I drew pictures of places in the house and hid the pictures in the eggs. The egg at his bedside held a picture of the couch, the egg on the couch held a picture of the sink, etc. The following year, and each year since, I've used digital pictures.

Or, according to Bud, digital maps.

I'm sure he remembers the Easter basket pay-off. I'm sure he'd be disappointed if it wasn't there. But the magic of Easter morning for him is in the thrill of the hunt - starting at the beginning and following each step in sequence to reach a logical conclusion. And the Easter Bunny will not disappoint this year. The hunt is on; the game is afoot.

And perhaps when the hunt has ended and the goodies have been discovered we'll finally be able to answer the question that's been on everyone's mind:

Do those Cadbury cream eggs SINK - pause - or FLOAT?

Friday, April 14, 2006

Class act

Though Bud had another sick day home from school today, it seems he is starting to be his old self again.

During our recent family festivities, Bud was introduced to the joys of whoopee cushions. Today, he has rediscovered the magic.

You know how it is.

Nothing says "anniversary" like artificial gas noises.

And nothing says "good health" like peals of Bud's belly-laughs.

Wednesday, April 12, 2006

Flu-id movement

The illness in our house is pervasive. It turns out that my husband has honest-to-goodness, diagnosable, Tamiflu-worthy flu. I have a nasty, but ordinary, head cold. Bud has something in between.

His fever is down, but today he was literally weak in the knees. He tried to get out of bed, and as he wobbled out of his room, shuffling and hunched over like a very old man, he announced "My knees are in trouble!"

I helped him over to the couch and, thinking that perhaps he was weak with hunger, got him to eat a little something before he stood up again. When he did, though, he was back to wobbling like a baby giraffe.

"What's happening my knees?" he asked.

I called the doctor, who told me to give him more Tylenol. Sure enough, within a half hour he was walking normally again. Nonetheless, he spent another uncharacteristically lethargic day on the couch. Unless we see a remarkable turn-around overnight, I'm afraid Bud will be home from school again tomorrow.

What's happening my Bud?

Good question

Bud is home sick for yet another day. He slept late this morning and had just climbed on to the couch, his eyes still puffy from sleep and sickness, when I rushed in to say goodbye to him and head to work.

He rubbed my arms and put his head on my chest and said, "Mom, can I ask you a question?"

"Sure you can, Bud," I said. "What's your question?"

He was quiet for a few moments as he leaned his head against me and thought about what to say next.

Then he looked up at me with his sweet sick eyes and weak smile and said "You're my best friend."

Now THAT is my kind of question.

Tuesday, April 11, 2006

In sickness and in health

The anniversary celebration was a smashing success. We honored my parents' 50th in true family style - with a family trivia contest, a poker tournament, karaoke, geocaching, a video slideshow, and food food food food food. Today family members are all exhausted, five pounds heavier, and very, very happy.

Bud managed the weekend extraordinarily well, despite - or, I suspect, because of - a virus that put him right out of circulation. During his crazy day at school on Friday, he was doing a lot of scripting from an episode of Caillou about being sick. His aide said that in addition to talking about being sick, Bud did a lot of fake coughing and sneezing. I hypothesized that he felt like he was feeling the first stirrings of a cold and was using the best words he had to talk about it.

On Friday night as the downstairs of our house filled with people, Bud retreated to the second floor landing, where he could station himself by the computer and still keep an eye on the goings-on below. He alternately pronounced the area his "Space Ship" and his "Tree House," and by the end of the evening he'd decided it was his "Spaceship Treehouse." The activity he was undertaking (printing page after page from the PBS Kids website), he dubbed "Computer Club." He only occasionally ventured downstairs, but managed well as people came and went through the Spaceship Treehouse. By the end of the evening, though, Bud had sick eyes. It's a look we rarely see from our usually healthy and robust child, and it is a sure sign that he feels terrible.

My suspicions were confirmed in the middle of the night, when he woke and called out to me. For the first time, he was able to tell me what he was feeling in a way that I could understand.

"My tongue hurts," he said. "My mouth is hot. My tongue is itchy." I think he had a sore throat.

I felt his forehead and it was burning, so I gave him some children's Tylenol and told him it would make him feel better. "And remember!" he sang out. "No more flashing colors!"

"Do you see flashing colors, Bud?"

"Yes."

Definitely a high fever. I remember experiencing the same thing as a child.

The next morning he still had a fever and had completely lost his appetite. As I sat trying to get him to drink a few sips of juice he said to me "Close my eyes, Mom."

"Close your eyes?"

"Yes. Close my eyes and hum."

"Close your eyes and hum?"

"Yes. Just the hum. Not the flashing colors."

So the fever was no longer creating visual effects, but auditory ones instead. This, it seemed, was no ordinary illness.

And so, we reconfigured Bud's plan for the anniversary weekend. As the rest of us headed out for fun and festivities, Bud and my husband cuddled up to nap, watch Teletubbies, sip fluids, and nap some more. In many ways, Bud's sickness made the weekend a whole lot easier for him. He didn't have to manage the crowds. He didn't have to encounter unpredictable changes in schedule. He just had to take it easy, which is exactly what he needed to do. My husband had to make do with "to go" meals from each of the weekend's festivities, and the poor guy ended up catching whatever it is that Bud had.

But Bud's spirits stayed good throughout. He developed a feel-better mantra that he encouraged us to say with him all weekend.

"Bud is sick," he'd say. "Bud is what?"

"Sick."

"No, Mama. Bud is sick. You do it. Bud is what?"

"Bud is sick."

"And Bud will what?"

"What?"

"Bud will feel better soon."

"Yes."

"You do it, Mama."

"Bud will feel better soon."

"Bud is what?"

"Bud is sick."

"And Bud will what?"

"Bud will feel better soon."

"Bud is sick. Bud will feel better soon. You do it, Mama."

"Bud is sick. Bud will feel better soon."

So the anniversary celebration has officially ended. Our last houseguests left for the airport this morning. My husband lost his voice, ingested megadoses of Nyquil, and is out cold. Bud's eyes are clearing slowly, but his appetite hasn't returned, he's still fighting a low-grade fever, and he has developed a cough, so he's spending a second day home from school.

Bud is sick. But Bud will feel better soon.

Or so I've been told.

Friday, April 07, 2006

Into the fray

A very quick and somewhat frantic update, in response to Wendy's most recent (and much-appreciated) comment.

This is a busy weekend for us, as we are about to embark on a three-day whirlwind of festivities to commemorate my parents' 50th wedding anniversary. Siblings, inlaws, cousins, and friends are flying in from hither and yon to join us and though we've done our best to prepare Bud for the onslaught and give him lots of options for opting-out, it's hard to know how it'll go.

Here's how it started:

Last night I left before bedtime to pick up my sister and her two kids, who were flying in at 10:00 p.m. Bud knew that they'd be here when he woke up. As I climbed into bed around 12:30 a.m. I could hear Bud in the next room talking (loudly and at length) in his sleep. It continued for about a half hour, at which point he woke up and climbed into our bed. The talking continued, though now he was wide awake (and so was I.) At 2:30 a.m. I gave him additional Melatonin and he fell into a very restless sleep, tossing and turning and kicking my husband mercilessly until 6:00 a.m. At that point, we all threw in the towel and got up.

Bud was reluctant to greet his cousins. Instead, he pointed his miper at them, pressed a button and shouted "Be gone!" It didn't work. Luckily, my niece and nephew are older than Bud, understand him, and don't take those kinds of things personally. Bud eventually warmed up, especially when his cousin joined him (read: watched him) playing on the PBS Kids website.

Then it was time for school. I was relieved. It would give Bud a break, and a brief return to his normal routine.

Not quite.

When I brought him to the classroom, his aide let me know that Mrs. H had a meeting at the end of the day and would not be there at pick-up time. The substitute teacher is a woman he knows well and likes very much, so I thought that though this would be a bump in the road of his day, it would likely be a very small bump.

Warning: frost heave ahead.

When I walked to the door of the school to pick him up I found a note directing me elsewhere. It seems there was a septic back-up of some sort and the Kindergarten classes - both of them - had been evacuated to the school library. I walked in to find most of the children sitting together, and Bud at the far end of the room, in fairly good spirits, but pacing and talking a mile a minute. I told him it was time to go home; he asked if he could hide in his room. I told him he could.

We're home now. A handful of guests are here. The rest arrive in an hour. Bud's got the computer, the iPod, and the portable DVD player ready to roll. He's scoped out some hiding places. I'm just taking deep breaths and crossing my fingers.

Wish us luck. And stay tuned...

Monday, April 03, 2006

What I think I know

It seems there are some difficult conversations in my future. I don't really want to blog about them until they've been had, but the preparation has forced me to really think about how to articulate what I believe Bud needs.

There's a lot that I don't know about what he needs. Sometimes I don't know what he needs until he gets something he doesn't need, and it all becomes clear in hindsight. But as I think about it and consider it from multiple perspectives, I keep coming back to the same thought.

I think that Bud will do best if we - all the people in his life - concentrate our energy on working with Bud, and not on working against autism. Am I being nit-picky with semantics again? I'm not sure; maybe I am. But it just seems as though that shift in philosophy - that (perhaps) subtle shift from a focus on the negative ("working against") to a focus on the positive ("working with") - is huge. For Bud. Or maybe for me. Or maybe both.

I think.

Sunday, April 02, 2006

Baby bust

Bud tried to tell me. He knew he was going to be scared at the play date, and he was. You see, he was thinking through the implications of the play date much more thoroughly than I was. I was thinking about Hayden and Hannah. Bud was thinking about their baby sister.

Bud does not care for babies. He never has. I think it's because they are too much like dogs - noisy, unpredictable, confusing, quick-moving and, perhaps worst, attention-grabbing. And it's not just any attention they grab - it's my attention. For as long as I can remember I have been a baby magnet. I am drawn to babies - all babies, any babies - and they are drawn to me. And Bud knows it.

In yesterday's post I proposed that Bud was scared because he didn't know what to expect from the play date. I was wrong. I think he was scared because he knew exactly what to expect: If we have a play date, they will bring the baby. I will not enjoy the baby. The baby will try to be with Mom. This will bother me. I will seek comfort from Mom. The baby will be near Mom. I do not want to be near the baby. I do not want Mom to be near the baby. I will be scared.

The script he was using last night to talk about it - "It's going to get me! It's going to get me!" -now suddenly makes sense.

Luckily, we were only seconds into the play date when I figured it out. I kept my distance from the baby, but it was just not meant to be. The deceptively sunny playground had an icy cold wind blasting through it (a real one, not a metaphorical one). We moved indoors, but that put us in closer proximity to the baby, who got tangled in her sister's legs and started crying. She calmed down, but then Hayden bumped his head and he started crying. It didn't take long for Bud to walk up to me, coat in hand, and say "We have to get going. Put on your coat, Mom." Then to his friends, he added, "Good luck with the games, everyone!"

Good language, good self-advocacy, good problem-solving. Bad play date.

Saturday, April 01, 2006

Wonderful scary

Bud's spontaneous language just keeps getting better. Even his scripting is getting more and more sophisticated. The greatest part is that he is finding it easier to talk about how he feels and what he needs.

We have a play date scheduled tomorrow with good friends of ours who have twins Bud's age. The kids have been playing together since they were three, and Bud always has fun with them. Hayden and Hannah are sweet, gentle children who take Bud at face value. They don't push him too hard. They welcome his presence, but don't get offended when he chooses to move away. They intuitively understand that they will all be more successful with games that involve running and chasing than with activities that involve focus or talking. More than that, they don't just passively accept Bud; they actively request play dates with him. I adore these children.

Bud adores them, too. But it has been a while since our last playdate, so I imagine that it might be hard for him to predict the specific ways that tomorrow might play out. We talked about it as he got ready for bed.

"I'm feeling scared," he said.

"What makes you feel scared?" I asked. I have learned not to ask "Why are you scared?", because Bud doesn't know what sort of information I'm looking for when I ask "why" questions. I waited, but Bud didn't answer, so I prompted, "I'm scared of..."

"My friends," said Bud.

"You feel scared about playing with Hayden and Hannah."

"Yes," he said. Then he began a series of mitigated scripts. I can't quote them exactly, but I recognized snippets of some - Bob from It's A Big Big World, Elmo from his first day of school - mitigated to the extent that they might as well have been his own. He climbed into my lap and said something like "It's going to get me! It's going to get me! It's okay, it's okay. You can just snuggle here with me. We can stay together. You can hold my hand." He slipped his warm little hand into mine.

"Of course we can stay together, Bud."

"We can just snuggle together."

"Yes, we can snuggle together if we feel scared. It's okay to feel scared."

"Bud's scared."

"You know, Bud, we don't have to play with Hayden and Hannah tomorrow if you don't want to. We could play with them another day."

"I'll play with Hayden and Hannah when I wake up."

"Okay, Bud. That's a great idea."

I'm sure he's still anxious. But we've talked it out and we have a plan: we'll keep hand-holding and snuggling in our back pockets in case we need them, and we'll forge ahead boldly into the play date with our scary, wonderful friends.

We've talked it out, and we have a plan.

Wow.