Tuesday, August 30, 2005

Breathing again

Another milestone reached. I survived the first day of Kindergarten. Bud, on the other hand, took Kindergarten by storm.

His teacher reports that he had a great day; he talked to kids, he talked to teachers, he even talked to strangers as they took a "field trip" to tour the school. (What she doesn't know and what I haven't told her is that he has been rehearsing lines from the Blues Clues video "Blue Takes You To School" recently, so I imagine a lot of what he was doing was appropriately using scripts - but, hey, any port in a storm, right?) He did have a bathroom accident towards the end of the day - but, heck, with the stress of the day I'm surprised *I* didn't have an accident.

Bud came bounding out of school at the end of the day with a big smile, announcing that "school was fun!" He says his favorite part was when his teacher gave him a kiss. As we bounced toward the car he waved and shouted over his shoulder, "Bye, string cheese! See you tomorrow!" (He brought string cheese in his lunchbox today and apparently only ate half.) In celebration of the day, we sang "Have a Holly Jolly Christmas" as loud as we could all the way home.

It's funny. Today is my birthday, but Bud is the one who looks older this afternoon.

Breathless

45 minutes ago, I dropped Bud off for his first day of Kindergarten. I can't breathe.

This is a new school for Bud, and he doesn't know any of the other kids. The day is structured so that they start out on the playground. Bud was very brave as we got to school, and even smiled for a picture. We headed out onto the playground and I made a beeline for the playground aides and introduced Bud to them, explaining that he didn't know any of the other kids and that he is autistic.

One of them blinked at me. "We're just the playground aides."

"Right," I said. "You need to know that he might leave the playground and head for the woods."

"Oh," she said. "We'll keep a close eye on him." Bud walked over to the slide and stood by as hoards of children swirled and romped around him. He was quiet, but didn't seem anxious or overwhelmed. He didn't even put his hands over his ears. He just stood.

Not wanting to drag it out for him any longer than necessary, I said the goodbye we've been practicing for weeks and made the long walk to the car. I couldn't resist the temptation to look back over my shoulder, and saw Bud watching me. He waved as my broken heart and I got in the car and drove away.

Okay, I admit it. Once I was out of sight, I parked the car and walked back to peer around the side of the building. Bud was standing in the same place, but instead of watching the parking lot he was watching the kids. I went back to the car and drove away again.

Okay, okay. I left the school, then circled back around to do a drive-by from a distance. Bud was in the middle of a group of kids and teachers. But he didn't seem upset, and no one seemed to be consoling him. I finally screwed up the courage to leave.

It is taking every ounce of strength I have to keep from sneaking down to the school to peek in the windows. I have two hours and ten minutes to wait until I can pick him up.

I still can't breathe.

Friday, August 26, 2005

Tipping point?

Earlier this week, televangelist and conservative Christian leader Pat Robertson cast aside the Ten Commandments and the Golden Rule and called for the assassination of a foreign leader.

Might we finally have reached the tipping point?

Calls from the political right decrying radical judges who try to legislate from the bench have become commonplace.

Are we finally ready to sound the alarm against religious leaders who try to legislate (or control the outcome of national elections) from the pulpit?

And as for Pat Robertson himself, I think Steve Brant said it best.

Thursday, August 25, 2005

Heartsick

I've had a lump in my throat and a pit in my stomach since I read this story yesterday about a 5-year-old boy with autism who died in his doctor's office during chelation therapy. I don't know this boy or this family, but I just can't stop thinking about them.

This is a scenario that plays on all of the darkest fears that I try to keep buried in the furthest recesses of my mind and heart. We have not pursued chelation with Bud. In fact, though the thimerosal/ mercury link rings true to me on an intellectual level I find that I have been unable to deal with the possibility of it on an emotional level.

How can the universe possibly make sense if something I did to keep my son safe actually did him irreparable harm?

When I allow the anxiety to surface, this is the form it always takes. Because we know so little about autism - because we don't know what causes it - because we don't know what helps it - because we don't know what could cure it - how can we as parents be anything other than immobilized with fear?

Who do we trust? How do we trust? If I hadn't gotten him vaccinated, would Bud be healthy and happy now? Or would he have died from a complication brought on by chicken pox? Or would he be just as he is now: happy, healthy, and autistic? I can't know. I will never know. And that is what makes the dark days almost unbearable.

Because if I can't even see the path that brought us here clearly in retrospect, how can I possibly envision the road ahead?

When I give Bud his daily dose of Strattera, I experience simultaneous hopefulness and dread. Am I giving him a fighting chance? Or am I making a horrible mistake? Is Bud's doctor our greatest ally? Or is Big Pharma our most insidious enemy?

And so, as I follow this unfolding story I cannot help but cast myself in the role of mother to this poor little boy in Pennsylvania. I can feel to my core how much I love him. I know that I will do anything in my power to give him every opportunity to have a full, rich life. And then I watch, as in a nightmare, while I stand rooted to the floor, unable to speak, unable to move, unable to scream, as the very action I took to save him somehow, cruelly and inexplicably, takes him away from me.

How can this possibly be?

Saturday, August 20, 2005

What do you say?

In a recent post, Tamar recounts a visit to the playground during which she encountered a little boy and his father. The father explained that his son was speech delayed, but did not indicate - indeed, did not even seem to know - that his son was, for lack of a better phrase, from France.

Tamar asks a question, startling in it's simplicity because it masks so many levels of complexity: "How do you tell a stranger that his son is autistic?"

Of course, the question begets so many other questions: Should you tell him? Is it any of your business? Who are you to make a diagnosis? What are the implications for this child if his parent continues to live in ignorance or (worse?) denial? Do we-who-have-been-there have an obligation to connect with others who we know (in the way that only we-who-have-been-there know) will share our journey? Do we have any right to drag someone into a journey for which they may not be ready? Tamar asks for feedback, for future reference, for this boy and for the others (because there will be others) who follow. She asks:

If you're reading this and you too are a parent of a spectrum kid and if someone came up to you in the park pre-diagnosis and said "Get your kid checked out, he [or she] is in trouble," how would you have responded?

Her question took me back about four years. When Bud was just under two we took a Kindermusik class. It was the first time I saw him around children his own age, and the developmental difference was striking. While the other kids sat and listened to stories, participated in simple hand-movement song games, and played instruments appropriately, Bud spent his time running, flicking on and off the lights, throwing instruments, and melting down.

After one particularly difficult class, another mom said to me "I give you credit that you keep coming," which rightly or wrongly I took to mean "Your child is disrupting the experience for the rest of us." So I lingered while everyone else packed up, and I caught the class instructor one-on-one. She'd worked with a lot of young kids and she had a degree in early childhood education; I wanted her take on what was going on, and whether or not we should withdraw from the class.

"I worked with a little boy who was a lot like Bud at the last daycare I was at," she said. "Obviously, similar behavior can mean really different things, but that little boy had a diagnosis of PDD-NOS." I think it was the first time I'd heard those letters, which are now so familiar they feel like my own initials.

I stammered out some sort of response, and I'm fairly certain she wondered if she'd said too much. "He's doing great now," she added with a smile. "In a regular classroom."

"Really?" I asked, secretly relieved that this was just a phase.

"Well, with an aide. But really much better."

"Oh."

I wonder if she replayed that conversation a thousand times, too. I wonder if she thought of a hundred other things she could have said to spare my feelings or to avoid overstepping her boundaries. But for as difficult as that moment was, I am incredibly thankful that she said what she said. Unlike her, I had never known another child like Bud. And to me, Bud was (and continues to be) perfect, so it probably would have taken me a lot longer to look into early intervention if she hadn't given me some letters to google.

So my vote, for Tamar, for myself, for any others who find themselves in the situation, is to say something. Say anything. Say it inarticulately if you must, and say it with care. "I see. I know. Me too. Bon jour."

Tuesday, August 16, 2005

Unsorted

Another thought on systemizing.

Over the past month or so, at the times when Bud has had enough, is at his limit, is as frustrated as he can possibly be, he has shouted the same thing: "But, Mama, it's UNSORTED!"

I imagine it's a script from a computer game. It's not a literal statement - he is not actually concerned about some belonging or other being all jumbled up. But the fact remains - when he's grasping for the right word to express his rage and frustration, where you or I would probably let loose with a string of curse words, the word Bud chooses is "unsorted." Fascinating.

Monday, August 15, 2005

Assortative mating

Simon Baron-Cohen's recent research on prenatal testosterone levels as they relate to autism has been getting a lot of press lately. I heard a brief interview with him on NPR's Day to Day yesterday. Baron-Cohen suggests that autism may be an extreme form of the typical "male brain," which is predisposed to systemize rather than empathize. He writes,

In my work I have summarized these differences by saying that males on average have a stronger drive to systemize, and females to empathize. Systemizing involves identifying the laws that govern how a system works. Once you know the laws, you can control the system or predict its behavior. Empathizing, on the other hand, involves recognizing what another person may be feeling or thinking, and responding to those feelings with an appropriate emotion of one's own.

He talks about the obsessions of people with autism as "very intense systemizing at work." I can certainly see this in Bud. Bud regards much of the world through a Teletubbies lens. When he encouters a new object, he considers how this object could be a part of the Teletubbies' world. So, anything that can be lowered or raised becomes the Tubbies' voice trumpet (which Bud calls "speakers.") Anything that makes a cranking sound becomes the "controls." Colors are always selected in the same order: purple, green, yellow, red (because, of course, one always considers the Tubbies in order - Tinky Winky, Dipsy, Laa Laa, Po.)

Bud takes this systemizing much further, though. When he looks at photographs, he often scans the background to pick out the Teletubbies he can see. So, he looks at a picture of his Dad and says "Look! A picture of Tinky Winky!" because in the far background of the picture he can spot a stuffed Tinky Winky on a shelf. (I have to say, though, he does this much less than he used to, which I imagine must be a good sign.) My favorite example of this uber-Tubbies-systemizing, however, was the time he paused at the bottom of the stairs and looked at the end of the round eye fastener for the safety gate sticking out of the railing:
















"Look, Mama!" he said excitedly. "It's Po!"

I have to admit, I could see the resemblance:
























Baron-Cohen further hypothesizes that autism is "the genetic result of assortative mating," in which two systemizers mate to produce one hyper-systemizer. My immediate reaction was "Well, then clearly we are the exception that proves the rule." My husband and I both score as INFP on the Myers-Briggs Type Indicator; we are warm, loving, caring people. Of course we have empathy!

Well, okay, I can see how my husband might be a systemizer. He has an encyclopedic knowledge of music. He can look at a stack of his many hundreds of CDs and instantly know which ones are missing. He has memorized lines and phrases from a multitude of television shows and movies, and can retrieve and quote one to fit virtually any conversation in which he finds himself... a more sophisticated version, in fact, of the way Bud adapts his scripts to fit his surroundings. And though my husband's natural inclination and preference is toward empathy, his ADHD can dramatically hamper his ability to read people accurately. So, okay, I can see how this might apply to him.

But ME???? Never. I practically have empathy coming out of my pores. My professional career is built on a foundation of empathy. No, no, no. None of this came from me.

Except.

I am an introvert. There are lots of social situations that I avoid when I can.

And, okay, I did score a 760 out of 800 on the analytical portion of the GRE. But that was just a fluke, right?

And, while not technologically-minded in a civil engineering sort of way, I was online in the late 80's, in the days before the worldwide web, when you still had to type "smtp%" to send an e-mail, and when virtually no one else I knew had even heard of the Internet.

And there is that tricky little McCartney obsession. I'm certain that without trying too hard I could connect that safety gate eye hook to something McCartney-related. There were the hours, days, months, and years I spent trading and collecting volumes of video and audio tape footage of McCartney interviews and appearances from around the world. And there were at least as many hours spent painstakingly cataloguing each individual clip to compile an accurate multi-page list, each entry alphabetized, dated, and timed down to the minute.

And I guess I should include the charts that mark the time when the McCartney obsession gave way to the baby obsession; the daily records (in now-embarrassing detail) of my basal body temperature and other bodily functions that reflect my attempt to predict and control a process that was so unpredictable and uncontrollable it nearly made me crazy.

And there's that wacky little notebook stashed up in the attic that records every morsel of nutrition that passed Bud's lips for the first several (I'm not even sure I want to know how many) months of his life.

And this blog. Yeah, there is this blog. Are all bloggers systemizers, when you get right down to it?

Assortative mating. Interesting theory, huh?

Sunday, August 14, 2005

Self-portrait

Here's a picture Bud took of himself all dressed up at his uncle's wedding. Nice tie, don't you think?





Friday, August 12, 2005

Only if you promise to give it back

Bud approached me tonight looking not at all frightened.

"I'm scared, Mama," he said. "Can I use your hug?"

"Well, of course you can use my hug, honey," I said, scooping him into my lap.

He snuggled right in and said, "I'm great for you, Mama."

"Yeah," I answered. "You are great for me, Bud."

Thursday, August 11, 2005

The best joke ever

One of Bud's favorite things to do these days is tell jokes. Most of the jokes he tells are ones he's memorized from Zoboomafoo, like:

"Knock knock."

Who's there?

"Panther."

Panther who?

"Panther no panth, I'm going swimming!"

He's got a million of 'em. Sometimes he takes a more surreal approach and just tells the punch line, like:

"Ants. And maybe uncles!"

I don't think he understands why any of these jokes are funny. He just knows that they are intended to make people laugh, and is always the first one laughing once the joke is out.

Tonight he was repeatedly scripting a joke from an Arthur computer game, in which Arthur's dad is giving the kids ice cream.

"Look," says dad. "We have chocolate, strawberry... and mocha almond spinach."

"Eeeeeewwww!" shriek the kids.

"Just kidding," says dad.

"Dad, that's not funny!" say the kids.

And actually, because Bud is not familiar with mocha or almonds, his version of the joke includes "milk on spinach." The way we "tell" this joke is to take turns being dad, or being the kids. After a few rounds, Bud started substituting words to make the joke his own:

"Look! We have pancakes, jello... and chicken nuggets!" or "Look! We have grilled cheese, apples... and bananas!"

After a couple of rounds like that I decided to try deconstructing the joke for him. I explained that the reason it was funny is that the dad named two very yummy foods and the kids expected him to name another yummy food, but then he fooled them and named somthing really yucky instead. I gave him a couple of examples, like "Look! We have grapes, pretzels... and bugs."

He caught on almost immediately. "Look!" he said slowly. "We have apples, waffles............ and banana hay!"

"Eeeeeeewwwwww!" I squealed, and he squirmed with delight. He made a joke and he knew it. And not only that, he knew WHY it was funny! He continued telling me versions of his joke, then wanted to take turns so that I would make up new versions too. Every version was different, but every one ended in something yucky. I realized quickly, though, that in Bud's versions the third options always took the form of "something good-something yucky." So in addition to banana hay I was offered apple branches, orange juice leaves, and the like. I imagine this is because in his original joke, the punchline "milk on spinach" mixes the yummy milk with the yucky spinach. And, purist that he is, he needs to stay true to the format.

I am absolutely delighted with these jokes. This seems like an enormous step forward for Bud - with reciprocity, problem-solving, creativity, flexibility, language, and emotion-sharing.

The only problem is, I've suddenly got this odd craving for pretzel dirt...

Tuesday, August 09, 2005

Musical tastes

Bud is a big fan of music, and music is a big part of his life. He could work a CD player by the time he was 2, and since that time he has had distinct musical preferences and a vast CD collection of his own. He also has an uncanny ear for melody and could sing in tune well before he talk.

Up until now, his tastes have run from the age-appropriate - the Wiggles, Laurie Berkner, Hap Palmer, Raffi, Sesame Street - to the things he has adopted from the collections of Mama, Daddy, Nana, and Papa, which include Paul McCartney, Sam Bush, John Denver, and the Irish Tenors.

But yesterday he was singing to himself while he was playing, and I started listening to him. It was clearly not a song I'd heard him sing before, but it was somehow familiar: "An she be weeeeeeeeeee be loooooove... an she be weeeeeeeee be loooooove."

"Bud," I said, startled. "Are you singing Maroon 5?"

"An she be weeeeeee be looooooove..."

So I started singing. "Bud, is that the song that goes, "I don't mind spending every day out on your corner in the pouring rain... and she will be loved?"

"Yeah," he said matter-of-factly.

I was flabbergasted. I don't own that CD, and neither does anyone else in the family.

"Where did you hear that song?"

"In the car."

I called to my mother in the other room, "Did you have the radio on in the car today?" She did (which is unusual, because Bud is usually very insistent on listening to his own music in the car, and she usually lets him.) But not only did he hear it and like it, he remembered it well enough several hours later to sing it.

Next thing you know he'll want his own iPod.

Monday, August 08, 2005

Tweaking the medication

After two weeks on the combination of Adderall and Strattera, Bud seems to have settled in enough for us to recognize patterns and assess the effects. I'm growing increasingly convinced that he doesn't have ADHD, and that stimulants act as stimulants to him. Even at the decreased dose of 7.5 mg of Adderall, Bud is just a constant stream of sound. He's either scripting, humming, making percussion noises, or talking from the moment he wakes up until he falls asleep.

The positive effects of Strattera are still clear, though. He is much more focused (so when he's doing his one-man percussion session and I say "Bud, what song is that?") he'll stop and tell me before he launches back into it. And his language ability is better than it's ever been. So we're tweaking again - staying with 10 mg Strattera, but dropping to 5 mg Adderall. My guess is that over time we'll drop Adderall altogether and perhaps bump up the Strattera.

I find this whole process very overwhelming. It's so hard to know what is the effect of medication and what is just a bad (or good) day.

A question for anyone out there who uses the vitamin supplement Super Nu-Thera. It's time to buy a new bottle. We've been getting the original flavor ("tropical fruit" - which tastes nothing like it) and have been mixing it in his apple juice. He's been putting up with it, but clearly doesn't enjoy it. Are any of the other flavors any better? And specifically, do any of them mix any better with fruit juice? Comments, please!

Thursday, August 04, 2005

A Long Way Down

Nick Hornby's latest novel, A Long Way Down, is sort of the opposite of the 1983 movie The Big Chill. The Big Chill is the story of old friends who come together following the suicide of a mutual friend; they spend a weekend engaged in introspection and analysis, each using the others as barometers by which to compare the level of his own misery, and finding comfort and direction in the process. A Long Way Down is the story of four strangers who meet on New Year's Eve on a London rooftop where they have all come with thoughts of killing themselves, but instead spend the next three months engaged in introspection and analysis, using each other as barometers by which to compare their levels of misery, finding comfort and direction in the process.

It sounds like a downer, but the book is full of Hornby's characteristic warmth and humor and the characters he creates are compelling, if not always endearing. Surprisingly, the character who seemed most artificial to me was the most Horbyesque character: JJ, a down-on-his luck musician whose band has just broken up and whose girlfriend has dumped him. JJ is a character that Hornby could bring to life with ease... except that this time Hornby made him American. Hornby is quite clearly British to the core; as a result, JJ seems more like a caricature than an actual person. Have you ever seen an American character on a British comedy (As Time Goes By, The Office, My Family, whatever)? They all tend to reflect the British idea of an American - loud, quick-talking, superficial, and cliche. And while many Americans are loud, quick-talking, superficial, and cliche, I haven't met any yet that are exclusively those things - certainly not in that unidimensional sit-com way. My issue with JJ is similar. He is not the same boarish American of BBC-TV, but he talks the way I imagine British people think Americans talk, instead of the way Americans actually talk. And since each chapter of the book is written in the voice and perspective of one of the four main characters, about 25% of it seemed just a half-step off.

Hornby is much more successful in making real Martin, a morning chat-show celebrity who has been in prison and the tabloids for sleeping with a 15-year-old; Jess, the troubled daughter of a government junior minister; and, especially, Maureen, the middle-aged mother of a profoundly disabled young man, who has only the Catholic church as an outside connection in her life.

A Long Way Down is a great read. Fans of Hornby's early work - Fever Pitch, High Fidelity, About A Boy - may be surprised by the greater complexity of this novel, which is similar in tone to 2001's How to be Good. But to me, the only thing really wrong with Nick Hornby books is that there are just too few of them.

Wednesday, August 03, 2005

Blogathon and on and on

This Saturday, a bevy of brave bloggers will be pouring out their hearts and tapping off their fingers for charity in a 24-hour Blogathon. While I don't have the stamina to be a participant, I will happily assume the role of enthusiastic supporter and one-woman cheering section.

If you can't join them in a frenzy of blogging through the day and night, you can make a donation to support them and some really important organizations, like the Autism Society of America, which Moi is blogging to support, or Cure Autism Now, which is This Mom's charity of choice.

See you in the comments section!