Saturday, December 31, 2005

Looking forward

I have tried all day, this final day of 2005, to reflect on the year that has passed; despite my best efforts, though, as I try to reflect my mind starts to wander and before I know it I find myself forgetting to look back and beginning to look forward. It's not that 2005 was a bad year. On the contrary, it was a very good year; everyone was healthy, we enjoyed many, many happy times, and Bud made huge strides forward. Perhaps I've simply gotten swept up in Bud's forward strides - the momentum is so great, the ride so thrilling, that there seems to be no need to look back; I'm just keeping my eyes on the next thing to come.

Because when I say I'm "looking forward," I don't just mean that I'm considering the year to come. I mean that I'm filled with anticipation and excitement. It's the feeling of knowing that your favorite author is about to release a new book; that you have front-row tickets to a concert you can't wait to see; that two weeks from tomorrow is your tenth birthday. I am really looking forward to what comes next for Bud, and for all of us.

Friday, December 30, 2005

Calling all tooth fairies

I need to find out the going rate for a tooth. Bud's got his first wiggly baby tooth, so it will only be a matter of time until the tooth fairy will be in business at our house. I don't think Bud would be at all excited about finding money under his pillow. Any other creative suggestions out there?

Wednesday, December 28, 2005

Comfort and joy

Bud has done extraordinarily well through the holiday, despite the unpredictability and irregularity of our schedule. I'm off from work this week, so we've had one fun-filled day of adventure after another - a trip to the swimming pool at the local college, time on the computer at my empty office, a trip to the toy store to exchange a duplicate and pick out anything he wanted, a long car ride to a fun children's museum. They've all been good things, but in Autismland sometimes even too much of a good thing can be dysregulating. And it has been, to some extent. But Bud has recognized it and has zeroed in on the coping mechanisms he needs to keep himself balanced and well regulated.

When I'm dysregulated and need to find a way to cope, I turn to coffee, or Paul McCartney's music, or a really good book. Bud turns to his old friends. So this week, in the midst of new toys and new drumming talent and new computer games and new adventures, we're experiencing the renaissance of Goodnight Moon, the lovely video made by the folks at HBO. The video had been one of Bud's favorites for several years beginning when he was a toddler, but for many months it has been relegated to the back of the video shelf, unwatched and gathering dust. Since Christmas, though, we've seen it repeatedly and heard many, many scripts from it. The book itself is also enjoying a comeback, and Bud has been "reading" it to us over and over again: "In the great green room there was a telephone, and a red balloon, and picture of..."

It makes a lot of sense to me. The new stuff is exciting and he really wants to throw himself into it. But it's the old stuff - the tried and true stuff, the predictable, recitable, entirely known-inside-out stuff - that provides a touchstone, a point of reference, and a jumping-off point. And he's ready to jump again - tomorrow he wants to cash in his bookstore gift certificate to search out two other books from the Goodnight Moon video that he doesn't have, Faith Ringold's Tar Beach and Mercer Mayer's There's a Nightmare in my Closet. He's ready to branch out and add them to the repertoire, secure in the knowledge that he can always return to the great green room.

Tuesday, December 27, 2005

"I love you" more

When I read Kristina's post on Charlie's use of "hi" over at Autismland, I realized that my recent post on the myriad meanings of Bud's I-love-yous did not present an exhaustive list. Since then I've recognized even more uses that I missed.

Like Charlie's "hi," Bud's "I love you" can be an admonition against singing in the car. Last week, as I belted out "Sleigh Ride" in the front, I heard from the back a determined "I love you, Mom. Don't sing." (Translation: "No offense. You're bugging me.")

It can also express gratitude. This morning he shouted up the stairs to ask me to rewind his videotape (in Budspeak, "Mom, it needs to be winding!") When I shouted down to tell him I'd be right there, he shouted back "I love you!" (Translation: "Thanks!")

It also acts as punctuation. Bud has taught himself the alphabet in sign language, using a poster that hangs in the bathroom in his classroom. The poster shows a hand making each letter, then shows the sign for "I love you." When Bud does his sign language alphabet he talks along, "A - B - C ... - X - Y - Z - and - Iloveyou." (Translation: "The end.")

And tonight, as I sat down to blog, I heard Bud in the next room having trouble winding down, calling out for water, telling me that he was scared, and trying anything he could think of to get me to come back in. "Mo - om," he sing-songed out. "Come give your buddy a HUG!" That did it. I peered around the corner and said "Okay, one more hug."

"I love you!" he cheered. "YEAH!" (Translation: "Hooray! One for the home team!") I'll let him go on thinking it was a win for the home team. But we know the truth; it was really a tie.

Saturday, December 24, 2005

"I love you" means never having to say you're sorry

"I love you": the three little words that every parent waits to hear. Many parents of children on the spectrum have to wait longer than most to hear them; some have to learn to recognize other expressions of the sentiment. With Bud, however, we never have to wait long to hear "I love you." Hearing it is not a challenge; interpreting it, on the other hand, can be.

"I love you" is sort of Bud for "Aloha," in that it means different things at different times and in different contexts. Sometimes it's a greeting, as when he creeps into the dark bedroom where his father is sleeping, crouches up by his dad's head and says "I love you, Daddy." (Translation: "I know you're not much of a morning person, but I'd love it if you'd wake up, and if you do wake up, it'd be great if you would not be cranky.")

It's also a farewell, as when I am leaving for work while he's engrossed in watching Jack's Big Music Show on Noggin and I'm distracting him by trying to say goodbye and get one more kiss: "ILOVEYOU!" (Translation: "Okay, okay, goodbye already!")

At other times it's a request, as when he sidles up to his grandfather who is eating slices of apple for breakfast and says "I love you, Papa. What a great breakfast!" (Translation: "Can I have some of that apple?")

Sometimes it's a comforting phrase designed to let me down easy, as when I suggest that we not watch Barney Christmas for the hundredth time and instead watch Elmo's Christmas: "I love you, Mom. Another day." (Translation: "Don't take this personally, but no.")

Frequently it's a diversionary tactic, as when we are sitting at the dining room table, hear a loud CRASH from upstairs, and shout "Bud, what are you doing?" The response comes instantly shouted back: "I love you!" (Translation: "I'd rather not discuss it." A side note, the other common answer to this question in similar scenarios is "Just helping.")

Still other times, it's an admission of guilt, as when I am standing at the stove cooking dinner and he walks up to me quietly and says, "I love you." (Translation: "You know that bowl you told me not to touch...?")

Very often it's an apology: "Bud, please stop banging those pans!"; "I love you." (Translation: "Sorry.")

And sometimes, when he and I are both at our dysregulated worst, when I'm frustrated and angry, when I've lost my cool and started shouting, when I have just frayed my very last nerve, it's a reminder to keep things in perspective, as he moves his impish little face nose-to-nose with mine, blinks his long Bambi-lashes, and gives me a tight-lipped grin: "You not angry; you happy. I love you." (Translation: "Is it really all that important, Mom?" Funny - it never is.)

But my very favorite "I love you, Mama" is the one that comes accompanied by his little arms around my neck, his face buried, breathing warmth into the crook of my neck. That's the one that means - well, just "I love you."

And it's in that spirit at this holiday season that in addition to our usual litany of good wishes, Bud and I send one more out to our friends in the Austismland blogosphere:

We love you.

Monday, December 19, 2005

Reason to celebrate

Clay's birthday party was an unqualified success.

There were two primary groups of children there: loud, rambunctious 4-to-6-year-old boys and louder, squealing-and-shrieking 10-to-12-year-old girls. Almost all of the other children were strangers to Bud. And yet there he was in the thick of things - engaged, smiling, and extraordinarily well-regulated.

He was so well-regulated, in fact, that when the boys' sledding activity turned into a game of human obstacle course he laughed as boys hurled themselves in front of his sled as it sped down the hill, resulting in a jumble of boy arms and boy legs and boy faces covered in snow. He waited patiently for his turn as five boys shared two sleds, and he asked other boys "is it my turn now?" He was unphased when, without warning, Clay jumped onto his sled as it zipped by and held tightly onto Bud's back and they flew down the hill together. He didn't even seem to notice the mayhem that ensued as the girls attacked the boys in a snowball fight that continued until Clay's mom noticed and started ushering them all inside.

He didn't seem to notice. But once they were inside and he had the sleds and the hill to himself he turned to me with a twinkle in his eye and gathered up a mitten full of snow. "I throw at you," he said tossing the flakes of snow toward me in a gentle flurry. "I got you, Mama!"

Inside, Bud took lots of breaks from the crowd and made his way to the playroom where he discovered an electronic keyboard. "Look, everybody!" he shouted down the stairs. "It's Bud's Dance Party!" He played happily upstairs, sometimes on his own and sometimes among a squall of shrieking children. But he joined the group quite a bit as well. He played Pin the Nose on the Snowman - blindfold, spinning, and all. He joined the group for singing Happy Birthday and eating ice cream. He had a perfectly wonderful time, and when it was time to go he protested: "But I want to stay at the party! I want to stay at Clay's house!" Clay's mom promised that he could come back another day, and he grudgingly agreed to leave.

What a milestone we've reached. The best part is that Bud knows it. He's been talking about the party since we left, reminiscing about Bud's Dance Party, jumping on my back to recreate Bud And Clay's Excellent Sled Adventure, blowing his party blower till he just can't blow no more. There's a new aura of confidence around Bud these days. And why not? After all, he's a kid who goes to parties.

Friday, December 16, 2005

Preparing for the party

24 hours and counting. Tomorrow is Clay's birthday party.

I asked Clay's mom, and they do have a dog - a small one, who will be kept away from the party. I talked about it with Bud and let him make the call. He insists that he wants to go, and says "The doggie is barking me. She's won't nearing me." This is my cue to reassure him that, in fact, the dog will not come near him.

I've never spoken to Clay's mom about Bud's autism, but of course in many ways it speaks for itself. I did tell her about his fear of dogs. "Even if you can only stay for 15 minutes," she said, "it would be great to have Bud there."

That was the right answer.

Thursday, December 15, 2005

In the beginning

I started thinking about it months ago when I read this post by Kyra on This Mom, and found out that Fluffy was conceived via in-vitro fertilization after a long struggle with infertility.

I continued to think about it as I considered the explosion in the rate of autism diagnoses in recent years. Clearly, I thought, exposure to mercury via immunizations is one thing that has changed in that time; what else has changed that perhaps I should consider?

I thought about it months later when Astryngia posted these thoughts about stressful pregnancies.

I thought about it most recently when I read Gretchen's post about Henry's difficult entry into the world.

It's still an incomplete thought, but it goes like this: how many of the children who are currently diagnosed with autism would not have made it, say, twenty years earlier? How many would never have been conceived? How many would have miscarried early? How many of them (how many of us?) would have died in childbirth? Without the tremendous medical advances that have been made in infertility treatment, perinatology and the maintenance of high-risk pregnancies, neonatal intensive care, etc., how many of our children would not have survived the first hours, the first days, the first weeks, the first months of life? How many would not have been success stories in Darwin's survival of the fittest?

There are a lot of us out here in the blogosphere posting about our children and our current struggles, victories, advances and setbacks with autism spectrum disorders. But not many of us have posted about the path that led us to where we are. It makes me wonder:

How many of us struggled with infertility? (I did.)

How many of us lost other pregnancies? (I did.)

How many of us had high-risk pregnancies with our ASD babies? (I did.)

How many of us had complicated or troubled deliveries? (I did.)

How many of our children had to remain in the hospital longer than the "typical" newborn? (Mine did.)

Maybe it's all a coincidence. But I'd be interested to know if anyone else has had a similar experience.

Wednesday, December 07, 2005

Brutal truth

Yesterday, Sal posted this on Octoberbabies:

"To be totally honest, TOTALLY HONEST - I love my daughter so much just the way she is that if there were a pill invented tomorrow that could cure her autism, I'm not sure I'd give it to her. Sure, I'd love it if she could communicate better and had an easier time relating but I'd be afraid of losing that adorable little character that runs around the house naked scripting, 'Three sides! A triangle! Like Zee's!!!'"

It's been on my mind since I read it.

I understand what she's saying; I really do. I adore everything about Bud. I marvel at his unique take on the world. I love the poetry and music that is his speech. I truly, madly, deeply love him down to the core of my being just as he is.

But if there were a pill invented tomorrow that could cure his autism, would I give it to him?

Would I give it to him knowing that I would risk losing the adorable quirks, the lovable idiosyncrasies, and the fascinating perspectives?

I would like to say I wouldn't.

But the thing is, if I'm being honest -

TOTALLY HONEST -

I would.

Monday, December 05, 2005

Ho ho ho

In the past, Bud has always been creeped out by Santa. I understand the sentiment; I find Santa a little creepy myself. But this year, the whole Santa thing "clicked" for Bud: I tell him what I want, and he brings it to me! So now Bud is all about Santa - with the caveat, of course, that Bud will not have to visit him at the mall, and that the old guy will agree to drop the presents and vacate the premises before Bud wakes up on Christmas morning.

Regardless, this weekend Bud wrote his first letter to Santa. More accurately, I wrote while Bud dictated. It says:

Dear Santa,
What do you bring for me? I want a movie and a toy and a magic hat and a magic cape and a wand. Serval kittens are great jumpers. Planets. Some drums. Controls.

Then at the bottom, with Hancockesque aplomb, he has signed his name.

I think Santa will be able to deliver in most cases. The controls may not be possible; Bud wants a sound-making control panel like the one in the Teletubbies' house. And one note about the serval kittens: he was watching Zoboomafoo while we were writing the letter. He doesn't actually want serval kittens.

At least, I don't think he does.

Sunday, December 04, 2005

Changing traditions

It seems that the Christmas Eve plan has been on Bud's mind. I awoke yesterday morning at 6:00 a.m. with Bud's face in mine.

"You don't sing 'Happy birthday to you...'" he lilted as soon as I opened one eye. "You sing 'hap-py-birth-day-BOY-JE-SUS!" He sang this out in the conga beat that Oobi uses to celebrate birthdays so that his creator doesn't have to pay the high royalty fees associated with the more traditional melody.

Latin rhythms to honor the sixth anniversary of Christ's birth. I can't wait to find out what comes next.

Saturday, December 03, 2005

Happy Birthday, Big Boy Jesus

Bud hates babies. He has hated them since - well, really, since he was one. I think babies are too much like dogs for Bud - they're unpredictable, they make loud noises, and they tend to divert the attention of the people whose attention Bud wants.

Apparently in school today there must have been some mention of the upcoming celebration of the birth of Baby Jesus, because at dinner tonight Bud announced, "I don't want birthday for Baby Jesus. Just boy and girl."

Now despite our current religious affiliation, we do try to connect Jesus Christ to Bud's experience of Christmas and we continue a family tradition of having a birthday cake for Baby Jesus on Christmas Eve.

So, we had an impromptu family meeting and we've struck a compromise. This Christmas we won't be observing the birth of Christ at Bud's house.

We'll be celebrating Christ's sixth birthday.

Thursday, December 01, 2005

Party boy

Clay invited Bud to his birthday party.

Bud has gone to birthday parties before, but they have always been for the children of my friends. He has not been invited to his very own friend's birthday party before.

Until now.

I'm holding my breath until I can ask Clay's mom if they have a dog, which will be the deciding factor on whether or not Bud will actually be able to attend the party. But even if we ultimately have to decline, it will not diminish the big picture here: Bud is welcome; he's wanted; and he's interested in the idea of going to Clay's party. And that big picture is really, really big.

Wednesday, November 30, 2005

Experience sharing

It seems declarative communication is catching on!

Like most kids on the spectrum, Bud uses mostly imperative language - "I want this", "Can I have some that?", "What is that thing over there?" I typically have to rely on other people - his teacher, the special ed team, Nana - to fill me in on the specifics of his day. I knew that Bud was eager to return to school (and to a predictable schedule) following an unsettling holiday weekend, but I was a little worried that he'd have a hard time settling in again. To my surprise, Nana reported that drop-off on Monday was a huge success. She typically hands Bud off to his aide at the front door, and he and the aide walk together down the long hallway to his classroom. On Monday, however, Bud entered the building with gusto, said a quick goodbye to Nana, threw back his shoulders, and strutted past his aide and toward the classroom. His aide raised her eyebrows and Nana, then followed Bud at a distance. Little Mr. Independent!

On Tuesday evening, I was toweling Bud off after his bath and he seemed lost in thought. Then his eyes sparkled and he looked at me and said, "Mama! I walk to Kindergarten ALL BY MYSELF!"

I almost fell over. He was proud... and he wanted to share his pride with me!

"You DID?" I gushed. "Wow! What a big kid you are!"

"Yeah!" he said. "I walk to the classroom all by myself! Like this!" He threw his towel to the floor, lifted his chin, puffed up his chest, and then - all grinning teeth, pumping elbows and poking ribcage - he marched across the bathroom floor to steal a glance of his big-boy self in the full-length mirror.

I could really get used to this experience-sharing thing.

Monday, November 28, 2005

I do declare

I posted yesterday about my efforts to give Bud more processing time when I ask him questions. I neglected to mention, however, how hard I'm trying to ask him fewer questions to begin with.

I've been working on integrating RDI into Bud's life, and one of the goals in RDI is to shift the way we speak to children on the spectrum to use 80% declarative language and 20% imperative language. Imperative language is the language that children on the spectrum tend to use most (99% of the time as opposed to 67% of the time for children with other types of developmental delays, according to one study.) Imperative language is that which is used for instrumental purposes like making requests, asking questions, and stating demands. It is the language of a black-and-white world in which there is One Correct Response.

Declarative language, in contrast, does not have utilitarian functions; it's goal is experience-sharing. Declarative communication does not require a specific response; instead, it's intention is to promote interaction, and share thoughts, ideas, preferences, and emotions with another person. It is a form of communication that by it's very nature says "I am interested in you, and I hope that you are interested in me, too." And it does not come easily to children on the spectrum.

As we work with Bud and try to help him develop language, it is really declarative language that we're working toward. He knows how to ask for what he wants. He even knows how to say please and thank you. He will be able to "get by" in the world with that kind of language. But I want more than "getting by" for Bud; I want him to engage with and be curious about people, to develop deep friendships, to fall in love and have someone fall back. So right now, I have to help him build a solid foundation from which to make those leaps. I need to help him learn to ask "how are you?", yes; but more than that, I need to help him care how you are.

And so, I try to role model declarative language for Bud, and give him small jumping-off points for experience-sharing conversation. Instead of "Bud, it's time for bed," or "Are you tired, Bud?" I try "You look a little sleepy," or "I'm feeling tired." Instead of "What did you do in school?" I try "I love the picture you brought home in your backpack." Instead of "Bud, put on your shoes so we can go," I try "It's almost time to go; I wonder what we should do next." It sounds easy, but I find that 80% is a real challenge. Imperatives roll off the tongue; declaratives take thoughtful intentionality.

And that, I think, is the point.

Sunday, November 27, 2005

Silence is golden

Yet more insight gleaned from the SCERTS seminar. During his presentation, Barry Prizant made frequent references to Ros Blackburn, a woman from England who has autism and often gives presentations at autism conferences. Like Temple Grandin, Blackburn is able to talk about autism in a way that gives neurotypicals real insight into life on the spectrum. One particular reference stood out for me.

Prizant said that he once asked Blackburn to name the thing that other people did that was most frustrating to her. She answered that other people don't allow enough time for people with autism to answer questions. Typically, she said, just as she is forming the answer the other person starts talking again. And not only that - they're not just repeating themselves, they are saying things differently.

It struck an instant chord. I do it all the time. I hear other people do it all the time as well. We honestly think we're being helpful.

We ask, "Bud, what did you do in school today?"

Pause.

We think, is he listening?

We say, "Bud, look at me. Was school fun today?"

"Yeah."

We think, good, he's listening. We repeat, "What did you do?"

Pause.

We think, maybe he doesn't understand what I'm looking for.

We ask, "What was your favorite part of school today?"

Pause.

We think, he still doesn't get it; I'll be more clear.

We say, "Did you play with toys at school?"

"Yeah."

We think, here we go! We say, "What did you play with?"

Pause.

And on and on it goes until we give up or have gotten enough yes/no responses to satisfy our need for the pretense of conversation.

According to Prizant, Ros Blackburn compares her experience of this sort of "conversation" to assembling a jigsaw puzzle. Someone asks a question, and she begins to piece it together - what are they asking? what is the expected response? what do I think about this? how do I put that into words? The piecing takes her full concentration, so she is silent while she thinks. She is silent, in fact, for a long time; long enough that the other person decides s/he needs to be "helpful". Unfortunately, by rephrasing the question, it feels to Blackburn as if the person steps in, grabs the puzzle she has almost completed, and hurls the pieces into the air. Now she has to start over, this time trying to assemble the puzzle with a heightened level of frustration. (And we wonder why people with autism get dysregulated?)

So I've been trying since the seminar to slow down my conversations with Bud and to stop "prompting" his answers. The conversations go something like this:

"Bud, what was your favorite thing in school today?"

Pause.

Pause.

Pause.

Pause.

Pause.

"I play Magic Letter Factory on the computer."

"Oh, that sounds fun. Did any other kids play with you?"

Pause.

Pause.

Pause.

Pause.

Pause.

"Sadie play me."

Pause.

Pause.

Pause.

Pause.

Pause.

"And Margo, too."

As the Dalai Lama says, "Remember that silence is sometimes the best answer. "

Thursday, November 24, 2005

Extreme dysregulation

It seems I attended the SCERTS seminar at just the right time.

As most parents of children on the spectrum know, the holiday season can be a challenging time for kids with ASD. Bud is no exception. Bud has been slowly winding up since Halloween, and hit full-tilt earlier this week. It actually started as birthday obsession. Bud's birthday is in September so it will be a long time before he celebrates another one, but he recently got a new Caillou's Birthday video and has been perseverating on having a birthday party. (Specifically, he'd like a Sesame Street birthday with an elephant cake.) This week was Nana's birthday, however, so there was a celebration, and some out-of-town family who hadn't seen Bud since his birthday came bearing gifts, so my insistence that "it will be a long time before your birthday comes" stood in contrast to Bud's real-life experience and only confused the issue for him.

And that's not all. It was a two-day week at school, which included a Charlie Brown Thanksgiving party. He spent a whole day with me at my office on Wednesday. We have out-of-town guests staying at our house. Daddy and I are home from work. We are eating meals at different times. We had our first significant snowfall. The tv has been playing football games instead of PBS kids. People are drinking and conversations are louder than usual. We cooked a turkey on the outside grill. Bud's sleeping has been thrown off. I've been cooking and doing dishes and talking to other adults instead of focusing my time and attention on him. It has been an unpredictable, upside-down sort of week for Bud and despite my efforts to talk him through each turn of events, the poor kid is simply on overload.

So today we had A Very Autistic Thanksgiving at our house. And this is why I am very, very glad that I've just attended Barry Prizant's seminar. As Bud went through his shrieking, throwing, banging, avoiding, refusing, protesting, ignoring, obsessing Thanksgiving Day, I was able to see his behavior for what it was: Bud was not being aggressive or difficult. Because of the wacky nature of the week, Bud was experiencing extreme dysregulation.

As Prizant and the SCERTS model explain, when a child is regulated he is in an optimal state of arousal and is "available" for learning and engaging. When a child is in extreme dysregulation (either because he has very low or very high arousal), he is no longer available for learning and engaging. Trying to engage in a "teachable moment" with a child in extreme dysregulation is futile. The primary goal, instead, is to help the child achieve regulation.

I kept the SCERTS philosophy in mind all day, trying in small ways to help him adjust and regulate as he encountered obstacles. As we approached evening, however, Bud passed the Point of No Return and all signs started flashing "meltdown ahead." I shuffled him quickly upstairs to the bathroom, away from the crowd and into his bedtime routine even though we were about an hour early. Daddy joined us to try to provide extra support and comfort, but Bud was having none of it.

"NO! I don't want to go to bed! I don't want to brush my teeth! I want to play my toys!" he wailed.

Daddy approached him, speaking in a low soothing voice, and leaned in for a kiss. Bud flailed wildly, belted Daddy in the nose, and sent his glasses flying across the room. Daddy's face registered shock. Bud's didn't show even a flash of acknowledgement that anything had happened. Barry Prizant's words flooded into my mind.

"Most "aggressive behavior" from children with ASD is not really aggression; it's dysregulation."

"But how do you know the difference?" someone in the audience asked. "I mean, obviously sometimes it's really aggression."

"Again, you have to look at the intention that's driving the behavior. Ask yourself why the child is doing this. If he's doing it to hurt himself or someone else, it's aggression. If he's not, it's dysregulation."

In a split second, I caught Daddy's glasses as they flew through the air and somehow (was it silently?) we agreed not to pursue a discussion with Bud about the incident. Daddy left quietly, and I continued helping Bud through his nighttime routine, not rushing it, making it as predictable and normal as possible. We got to his bedroom, turned down the lights, started reading a book, and before I finished page 3 Bud was sound asleep.

One day down; 31 shopping days to practice the art of regulation ahead.

Wednesday, November 23, 2005

Happy Thanksgiving

I spent yesterday writing a long post about Bud's amazing development, and yet when I see it in action it still takes me by surprise.

Today was a school holiday, so I brought Bud to the office with me. He loves coming to my office, but usually only accompanies me after hours when no one else is around. Today he was surprised to find a small number of coworkers when we arrived. He was characteristically shy at first, avoiding their eyes and hiding behind my back as they said hello to him, but as the day wore on he grew increasingly more comfortable.

A safety officer whom Bud had never met stopped by on rounds. "Hey there, Big Guy!" he boomed.

"Hi," said Bud.

"How ya doin'?"

"I'm good. How are you?"

Wow.

Later in the day, another coworker whom Bud doesn't know well stopped by to say she was leaving for the day. Bud was at the computer in the room next door to me, and I heard her say as she walked down the hallway, "Goodbye, Bud! Have a nice holiday tomorrow!"

There were a few silent beats, then I heard Bud's voice ring out down the hallway after her, "Bye! Happy Thanksgiving!"

Happy Thanksgiving, indeed.

Tuesday, November 22, 2005

Resounding echoes

In a recent post, I discussed my (thankfully short-lived) concern that Bud's classroom was adopting a square peg/round hole, just do your best to "pass," one-size-fits-all sort of philosophy. I based this supposition on a single element: a piece of representational artwork that Bud brought home and that I knew could not possibly be his because Bud does not do representational art.

Since the moment I clicked on the "publish post" button, Bud has produced nothing but... you guessed it, representational art. And he's not just producing it; he has developed a passion for it. On a nightly basis, he pulls out his markers and a stack of paper and gets working.

But I'm noticing an interesting phenomenon. Though he's producing representational art, he is not creating it from his imagination. So far, his artwork has been limited to what he has seen in videos: he draws the clues he's seen Joe and Steve draw on Blues Clues; he draws the scenes he's seen Oobi draw on Noggin. In the same way that so much of his speech is derived from videos, he is scripting his drawings. I've begun thinking of it as visual echolalia.

Framing Bud's drawing as echolalia also made me look at another phenomenon in a different way. In his blog, Patrick Fitzgerald searches for an explanation for his son Dan's recent habit of opening books in synchrony with the opening of the book at the start of his Disney movies. Patrick describes Dan's behavior this way: "He has gone around the house, gathering all the large books he can find. He then lays them out carefully around the room. As the movie starts and the on-screen book opens, he goes along his line of real books, opening them. At the end of the movie, as the on-screen book closes, he reverses the process." I recognized the behavior immediately, because it's similar to what Bud does. He doesn't watch Disney movies, but he does watch Clifford the Big Red Dog, and every episode has a "Speckle story" that Emily Elizabeth reads to Clifford. At the end of the Speckle story, the pages flutter and the book closes. Bud delights in recreating this grand finale - again and again and again. It seems to be some sort of behavioral echolalia.

At the SCERTS seminar I attended, Barry Prizant discussed the phenomenon of echolalia. Too often, he said, people view echolalia as a problem because it is such unconventional speech and, as a result, they respond to it with statements like "Now stop all that silly talk." Instead, we should look beyond the behavior itself and try to identify the function that the echolalia is playing for the child. The most important question when dealing with echolalia or most other "autistic" behaviors - the question that will help us remediate the problem instead of address the symptom - is "why?".

When I look at the evolution of Bud's echolalic speech, I see phenomenal developmental progress. Bud's echolalia seemed to start as strings of words that didn't have any particular meaning to him, but that he used as a means of self-regulation. As Bud developed, his echolalia became more complex and he began to use it in meaningful ways. If we were playing ball, Bud would pull out a line from a script that had something to do with playing ball and seemed somewhat relevant to the context. Later, he advanced to the point where he could use mitigated echolalia, substituting specific references from the script with salient details from the real-life situations to approximate conversational meaning. (He still does this masterfully.) Only then was he able to step out and take risks with creative language. Prizant frames this pattern of development,which is typical of many children with ASD, as movement from a gestalt mode of language acquisition (in which phrases and multiword utterances are the basic units of language) to an analytic mode (in which single words are the basic units of language). This sort of development, says Prizant, is a very positive prognostic indicator for the child's continued language development.

So what role is Bud's echolalic language playing now? I believe that Bud has used echolalia to create opportunities for what RDI's Steve Gutstein calls "productive uncertainty," and what I've called chaos and creation, to test the waters of communication to see if he's able to swim. He started using scripts because that was the form of language in which he had the most confidence. Bolstered by his success, he was able to take a bigger risk and start substituting words. That risk had a huge pay-off and allowed him to have real back-and-forth communication for the first time. Once he became comfortable and "safe" with that level of communication, he was finally ready to swim without his floaties and start to construct his own creative language.

Similarly, when I look at most of Bud's "echolalic" behavior - recreating scenes from favorite videos - I see that it has been an important step in the development of his capacity for pretend play. I think that in many ways it started as a way to connect. Because his real-life peers are unpredictable, socializing with them has been a struggle for Bud. But the characters in his movies? They are his perfect playmates - predictable, consistent, and always at the ready. Recreating scenes from their lives gives Bud an opportunity to be a part of their lives. And, as with his language development, it has given Bud the chance to take the risks and achieve the success that makes the idea of risk less scary and more appealing.

My hunch is that, bolstered by his achievement in language and play, Bud is using a similar process with his artwork. Early on, Bud was loathe to pick up a crayon, marker, or paintbrush. When his first tentative stray marks of paper earned praise, he got bolder and more intentional with his strokes and blobs. When those creations met with rave reviews he took the risk toward representational art, but is starting with pictures that he knows have a "right answer." My hope, and my hunch, is that before long he will move into creating pictures from his mind.

As Barry Prizant said, our attribution of a behavior - our perspective on the "why?" - frames our response to it. It's fascinating that when considered from a different angle, echolalia transforms itself from an annoying, frustrating example of disability, into a valuable developmental process. Prizant uses a quote from Wayne Dyer that I think sums it up nicely:

"When you change the way you look at things, the things you look at change."

And change and change and change.

Monday, November 21, 2005

Communication and integration

One of the great ironies in my life is that I teach a college course in Interpersonal Communication. To the students enrolled in the class and the college that employs me, I am (on some level) considered an expert on the subject. And yet, my son - the student who gets the greatest number of hours under my tutelage - finds that this is the very subject that evades him most. There is some sort of cosmic somersault at work here, I think.

I have found, though, that my life with Bud has greatly informed my teaching, and that the material I teach has provided a valuable lens through which to view Bud's strengths and challenges. I recently added a new perspective to the mix when I attended a seminar by Barry Prizant on the SCERTS model, which is "a comprehensive, multidisciplinary framework designed to enhance the communication and socio-emotional abilities of young children with Autism Spectrum Disorders."

Since the summer, we have been integrating RDI into our activities with Bud at home, and I really believe in the program. The downside of RDI, however, is that it is complicated. I've given the team who works with Bud some basics of the philosophy - slow down, use fewer words, wait 45 seconds for a response, use declarative language - and they've been great about implementing them, but the bulk of the work we do with RDI will continue to be at home with the guidance of an outside consultant.

SCERTS, on the other hand, is designed to be a curriculum-based assessment for use by professionals who work with children in the classroom setting. It is in line philosophically with RDI, but is packaged in a more user-friendly way with clear assessment tools that yield specific goals and objectives appropriate for each individual child. It is a program that I think Bud's team will find helpful, and even inspiring.

The SCERTS program addresses three domains for assessment and intervention: Social Communication, Emotional Regulation, and Transactional Support. Social Communication and Emotional Regulation are, of course, two main areas of challenge for children on the spectrum. In the area of Social Communication, SCERTS sets as the overriding goal "to help a child become an increasingly competent, confident, and active participant in social activities and events," by enhancing the child's capacity for joint attention and reciprocity, expression of emotion, and understanding of others' emotions. It seeks to help children become more conventional communicators and to enhance their abilities for pretend play and symbolic behavior. It seeks to help them become full partners in the intricate dance of communication.

Through a focus on Emotional Regulation, SCERTS helps children achieve and maintain an optimal level of emotional arousal to maximize their "availability" for learning and engagement. The focus in ER is trifold: self-regulation (using strategies to regulate independently), mutual regulation (achieving regulation through social transaction), and recovery from dysregulation (being able to employ these strategies in times of extreme dysregulation, when the child is no longer available for the learning process.)

Transactional Support is an area not addressed in RDI, but is extremely important in the educational setting. TS focuses on the collaborative efforts of everyone (teachers, parents, caregivers, siblings, peers) who work with a child so that the same goals and strategies are infused across a child's daily activities.

Fundamentally, SCERTS is about integration: integrating work across disciplines, so that SLPs, OTs, PTs, classroom teachers, special educators, school psychologists and parents are all working from the same guide book; integrating approaches and philosophies that reach core deficits, instead of focusing on treating symptoms; integrating strategies for communication development with strategies for emotional and sensory regulation.

And so I start the process of integrating SCERTS into our own little grassroots approach to ASD. It's not too difficult, really. SCERTS, RDI, my class in Interpersonal Communication: they all have the same goals, when you break them down. To use an analogy from RDI's Steve Gutstein, we are all trying to help our students become "broadband communicators", to trade in their 2800 baud modems for high speed cable, to download and interpret volumes of information in an instant and respond appropriately. SCERTS encourages students to simultaneously share attention, share affect, share intention, and share symbolic systems. RDI promotes dynamic intelligence through the development of emotional referencing, social coordination, declarative language, flexible thinking, relational information processing, hindsight, and foresight. And my class in Interpersonal Communication teaches students to view themselves and others as sender-receivers, to be intentional with and attuned to verbal, nonverbal, and paraverbal messages, and to remain aware of their filters of perception and attribution.

Different words; strikingly similar goals.

So I take it back, what I said about teaching Interpersonal Communication and having a child with ASD. I was wrong. It's not a cosmic somersault; it's a cosmic cartwheel. It's not one of the great ironies in my life; it's one of the very good fortunes.

Saturday, November 12, 2005

The art of education

One of Bud's favorite activity centers at Kindergarten has two easels, bright paint, thick paintbrushes, and reams of blank canvases of construction paper. Several times a week he brings home a masterpiece, rolled up in an rubber band, sometimes so fresh the paint is still sticky. One such masterpiece, a swirling collage of blobs and streaks of primary colors, is framed and hanging on the wall of our family room. Bud is proud of his artwork, and we are appreciative patrons of his art.

A couple of weeks ago he bounded out of school with a rolled-up paper peeking out of his backpack, but when I got it home and unrolled it I was speechless. There was a strip of blue paint across the top and penciled in next to it, in adult print, was the word "sky." There was a green strip of paint at the bottom ("grass"), a brown strip up the center with a green blob on top ("tree"), red dots on the green ("apples"), a yellow blob near the blue strip ("sun"), and an orange blob near the green ("cat").

It looked exactly like the work of a typical Kindergartener. It looked, in other words, nothing like Bud. My initial reaction was that he must have mistakenly taken another child's painting. But I flipped it over and, sure enough, there were Bud's initials on the back.

I was completely shaken. What is going on in that classroom? What are they trying to do? What are they trying to make him be?

What are they doing to him?

I began to wonder if I had completely misread the cues I'd gotten from the educators who work with Bud. I thought we were collaborating. I thought we were on the same page. I thought we shared the same philosophy. But this - this - this PAINTING changed everything.

I started rehearsing the conversation in my head. I pictured myself approaching his teacher, a wonderful, insightful, caring, tireless woman whom Bud adores, and who makes Bud feel like the center of the world. And I saw myself speaking, wondering if I'd be risking everything, wondering if my words would cast aside any progress we'd made, or - worse - if they'd reveal that there had never been any progress and that our mutual understanding was mere illusion.

I knew what I had to say: "That picture that Bud brought home: it was jarring to me. That's not how he paints. That's not how he expresses himself. That's not who he is." I wanted to tell her that I was concerned about the message that picture sent to me about the educational philosophy being used with Bud in the classroom: that it indicated a lack of respect for him, for where he is, for what he can do. It told me that there is a box -one single box labeled "correct" -and that the goal in this classroom was to make Bud pretend to fit into it - not, as I thought, to help him explore what he already has inside him and help him bring all the best parts of himself to the surface. It told me that the creative, colorful, dynamic artwork he brought home was not good enough. Worse - it told me that the message sent to him was that his masterpieces were not good enough. It told me that the product - and not the process - was at the center of the educational experience. It told me that they didn't get Bud, and that it seemed they weren't trying to get him.

It was a daunting message to think about delivering to a woman I like very much.

But the next day I steeled my resolve, took a deep breath, and entered the classroom. I lingered until the other parents were gone, then I launched into the speech I'd rehearsed.

"That picture that Bud brought home..." I started.

"I know," she said.

"It was jarring to me."

"It was jarring to me, too. Someone else was working with him at the time. But we've talked about it - you know, this is a learning process for all of us - and it won't happen again. It was very well intentioned, but..."

"But it's not Bud," I finished.

"No, it's not Bud," she sighed. She went on, and unrehearsed and impromptu, gave my practiced speech back to me.

We are in synch. We're on the same page. We share the same philosophy.

"Now," she said. "I've just got to figure out a way to be his teacher for the next twelve years."

Tuesday, November 08, 2005

Only a memory

For the past couple of days, Kristina's post about "splinter skills" on My Son Has Autism has been simmering in the back of my brain. Last night, when I posted about Paul Collins's new book, The Trouble With Tom, I quoted a passage from Collins about memory and shortly after that my mind began to boil over.

Collins wrote,
Every moment gets thrown out like so much garbage - which, in a sense, is what the past is. Memory is a toxin, and its overretention - the constant replaying of the past - is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad.
So, what if I've been looking at it backwards? What if Bud's "splinter skills" - remembering volumes of video dialogue with appropriate inflection and dialect, remembering the lyrics to every song he's ever heard, remembering the track number of every song on every CD, entering a store he was in once before several years ago and knowing instantly what he played with there - what if all these things are not because of an extraordinary ability or even an obsessive compulsion to remember?

What if they are because of a diminished capacity to forget?

The more I think about it, the more sense it makes. Perhaps Bud is overretaining some one-off interaction with a dog that happened so quickly I didn't even see it, but has rendered him pathologically fearful of dogs ever since. Perhaps it's the overretention of information that produces scripting echolalia; if he is unable to forget these lines, maybe obsessively reciting them is the only means he has of purging, of letting off some steam. Perhaps it's the overretention of memory that prevents him from cycling down with the rest of us at sunset, that keeps him sleepless, that wakes him early.

Doesn't it make sense that he'd be reluctant to interact with new people if he ran the risk of having to carry them all with him forever? Wouldn't it make him want to stick to the videos, the experiences, the foods, the everything he already knows he likes if he knew he wouldn't be able to sort out and discard the videos, experiences, foods, and everything that he didn't like? Wouldn't it make him want to put his hands over his ears in new situations to try to keep some of it from getting in?

Maybe this is where the computer metaphor for the autistic brain makes sense. Perhaps Bud's brain has enormous capacity for memory, but is unable to selectively delete the contents of his hard drive that he no longer needs. Maybe he needs help to defrag.

I think about the imperative messages I deliver to him all day in an effort to help him to focus, tune in, and attend to the world around him:

"Listen, Bud."

"Pay attention."

"Look at this."

Perhaps I'm overlooking the most important imperative of all:

"Forget about it."

Monday, November 07, 2005

The Trouble With Tom

I think that Paul Collins could write a telephone directory and make it compelling. He is that good a writer. The first time I read one of his books, he was writing about a subject dear to my heart, but since then I've read and loved his other books, which were about things I'd normally find mildly interesting and things I would not have pursued otherwise.

His latest release, The Trouble With Tom: The Strange Afterlife and Times of Thomas Paine falls into that third category; it's not the sort of book I'd typically seek out. It actually reads a bit like a prequel to Sarah Vowell's Assassination Vacation, and leaves me hoping that someday Collins and Vowell will take a trip together then co-author a book about the journey.

The Trouble With Tom is not exactly a biography, though it certainly has biographical elements. It's more a historical exploration, with a heavy dose of mystery whodunit, a bit of nineteenth century medical journal, and a great deal of comedic travelogue. It's... well, it's hard to pin down.

The book begins with the revolutionary Thomas Paine, and provides a brief account of his life. It is at his death, however, that the story gets rolling. Collins writes in a flash-back-flash-forward style as he retraces the steps that Paine's body (well, some of the pieces of his body, at any rate) took (well, may have taken, at any rate) from the moment of his death in 1809 until... well, it's hard to say when. Through Collins's narrative we travel to 1809 and the Herring Street boarding house where Paine breathed his last; we also join Collins on his recent pilgrimage to that hallowed ground, now a Grove Street piano bar filled with the sounds of Rogers and Hammerstein in bass-barritone. And it only gets stranger from there.

Along the way, we meet a variety of supporting characters who participated in the complicated catch-and-release of Paine's remains and others who searched for them as they remained perpetually out-of-reach. And we get a fascinating history lesson to boot.

My favorite moments in the book, though, are those in which Collins shares his own insights, perspectives and notions. He writes:

We forget all the time. We forget nearly every single impression that passes through our minds. What we ate for lunch: who our roommate was ten years ago: what we paid for a soda in 1982: what we just came from the living room to the kitchen for. It is constant and vital, and we only notice it if everyday useful things go missing. Every moment gets thrown out like so much garbage - which, in a sense, is what the past is. Memory is a toxin, and its overretention - the constant replaying of the past - is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad. And so it is that the details of nearly every single day that we have lived, nearly every single moment of each day, nearly every person that we have met and spoken to, the exact wording of the paragraph that you have just read... Gone.

The Trouble With Tom is overflowing with these thoughtful asides. It revisits long-since-discarded ideologies and theories. It depicts a history in which disparate characters and uncommon worlds collide. It paints the past as a series of mishaps and missteps, all stumbling sideways, askance and askew, but always in the general direction of the future. It is a remarkable book.

If only I could remember what it said.

Saturday, November 05, 2005

I think I've (finally) got it

Many months ago, I posted about a mystery that had me stumped, in which Bud had started calling the remote control to the portable DVD player a "miper." I knew there had to be a logical reason, but I couldn't for the life of me figure out what it was.

When Bud adopted the "miper" title, his obsession d'jour was using it to change the Teletubbies narrator from speaking with an American accent to speaking with a British accent, then back again.

Tonight, after days of listening to him beg, I relented and let him watch home videos of himself. I am usually loathe to do this, because 1) the videos remind him of old scripts he has stopped perseverating on, and reintroduces them into his repertoire for a while, and 2) the videos themselves start to become scripts for him to perseverate on. However, I did let him watch himself in action for about 30 minutes. In one of the segments, he was in the bathtub singing loudly into my round hairbrush.

An hour later, the videos were stashed away and it was bathtime and - true to form - Bud wanted my hairbrush so that he could recreate the scene he'd just watched.

"Mama, can I have my miperphone?"

"Your what?"

"My miperphone."

The fog lifted. A miperphone is a device that you talk into that changes the sound of your voice. So what would you call a device that you don't talk into that changes the sound - the accent - of a voice?

A miper, perhaps?

Not even wrong.

Friday, November 04, 2005

Reading my mind

There are a few things I've read recently that have been on my mind.

This post from Sal at Octoberbabies is the single best piece of writing I've seen to help neurotypicals understand autism. I sent the link to Bud's teacher, and plan to distribute it widely. It should be printed on the front page of the New York Times.

And speaking of the New York Times, this article by Paul Collins, which deals with the difficult decision of giving medication to his son Morgan, appeared there last weekend. Those of us who have struggled with similar decisions will recognize ourselves in the paragraphs. My real hope, though, is that the article will reach a much wider audience and will open the minds of those who have never been there but are nonetheless quick to make judgments about the rest of us.

And though I try desperately not to be conspiracy-minded, I simply cannot stop thinking about articles like this and this.

Wednesday, November 02, 2005

Sick or treat

After weeks of preparation and discussion about making the bold move to being a pirate after two years as a firefighter, Bud had to sit out the Halloween festivities this years. Plans were progressing smoothly until Sunday afternoon when we were out shopping and Bud recreated a scene from The Exorcist in a public restroom. All over the restroom. If you know what I mean.

So this year there was no pirate costume, no trick-or-treating-and-trying-to-hold-the-candy-bag-while-keeping-hands-on-ears, no Kindergarten classroom party or school costume parade, no nothing. I was disappointed on his behalf, but Bud was completely unphased by the change in plans. He happily collected his party booty a day late in school. He declined the opportunity to wear his costume to a Day of the Dead celebration on November 1 (though after viewing with fascination the elaborate altars with miniature sarcophagi and skulls made of sugar, he announced "Mama, I like this circus!")

And now the local retailers are moving quickly, sweeping the shelves clear of cauldrons and candy, and restocking them with twinkling lights and candy canes and wrapping paper. Bud has wasted no time in making the transition, either. He's announced that he wants drums for Christmas. Big drums with cymbals. I'm beginning to understand why he was so quick to write off Halloween. Enough with the preliminaries; let's get to the good stuff.

Thursday, October 27, 2005

You've got to be joking

I seem to spend a lot of time thinking about Bud's "theory of mind" and looking for examples of his ability to use it. If Bud is going to learn to communicate - I mean real interpersonal communication, not just human interaction - then he needs to learn not only how to comprehend the words that are being spoken, but also how to interpret the intentions and motivations behind them. I try to provide a lot of opportunities for him to hone his skills.

The other day, Bud was playing with a basketball and he held it up to me. "Mama, what's this?" (Readers familiar with this blog will know that giving this kind of "pop quiz" is one of Bud's favorite pasttimes.)

I considered the basketball. "That's a monkey," I said.

"No, it's not a monkey," said Bud.

"Oh, right. It's not a monkey. It's an elephant."

"No, it's not a ..." Bud stopped himself in midsentence. Then he looked at me suspiciously, and said, "You're joking me."

He's on to me!

Tuesday, October 25, 2005

More chaos and creation

I posted previously about how much Bud and I enjoy Paul McCartney's latest CD, Chaos and Creation in the Backyard. Since then I've been thinking a lot about what an appropriate title that is for our life right now.

"Creation" is a primary goal for Bud these days. He is learning to string words together to create meaning, instead of using scripted language to approximate it. He is learning the art of creative problem solving, instead of relying on us to solve his problems for him. He is learning to assert himself and make his wants and needs and preferences and ideas and imaginings known - he is creating his self-image and, with our help, creating his place in the world.

At the same time, Bud likes routine and predictability. He likes knowing what's going to come next, and likes the satisfaction of having things play out just as they "should." Often, and especially in times of stress, Bud needs that kind of routine and predictability. However, I find that the student development theory I use with college students works with Bud as well. The theory suggests that to develop to their greatest potential, students require an environment that provides the right balance of challenge and support. In an environment that provides too much support and not enough challenge, a student will stagnate. In an environment that provides too much challenge and not enough support, a student will become overwhelmed and will shut down.

And so it is with Bud. He needs routine and predictability, but if we allow him too much of it he turns further inward and his creative ability slows. If he has too little routine and predictability, he is scared and anxious, unfocused and distressed. We must constantly reassess and readjust to find the ever-changing balance; we must preserve enough of the "known" to help him to feel safe, and find just the right moments to introduce an element of surprise, of uncertainty... of chaos.

These are not move-the-earth moments. They are tiny moments that are easy to miss, but they are of critical importance to Bud. One of those tiny moments happened last week while we were playing with his Teletubbies.

"Mama, what Tinky Winky's favorite color is?" Bud asked.

I knew the right answer. The right answer is purple. We have played this game a million times, and the right answer has always been purple. Tinky Winky is purple, so purple is his favorite color. To suggest otherwise in the past has been to start an argument. And yet... I went there again.

"Well," I said, "Tinky Winky is purple. But today I think his favorite color is orange." Bud considered my answer without comment. No argument, but no comment.

"What Dipsy's favorite color is?" And the game continued. I suggested that Dipsy liked blue instead of green, Laa Laa preferred pink to yellow, and Po would rather white than red. Bud accepted my answers quietly.

"Bud," I asked, "What do you think Tiny Winky's favorite color is?"

"Yellow," he answered.

One small step for a Teletubby; one giant leap for Bud.

Another moment, a few days later. Bud was playing with the Tubbies again, this time having them act out a script from a video: "Four happy Teletubbies hopping 'round the tree. One went to hide, and then there were three..."

"Yeah!" I said. "The Teletubbies can play hide and seek! Dipsy can be "it" and the others can hide."

Bud dropped his script instantly and set to work hiding and seeking, creating interTubby conversation, and helping them play the noncompetetive and highly collaborative Bud-version of this popular game in which the hider announces his location as soon as the seeker is in sight ("Ready or not, here I come!" "Here I am, Dipsy. I in the plant!") Another creative leap forward.

Then last night, as we were getting for bed we were playing a rousing game of "I Want To Wear Jammies," a game I developed a couple of years ago when Bud was first starting to use language. It's a game designed to encourage turn-taking, model the back-and-forth flow of conversation, introduce unpredictability, and provide opportunities for shared emotion. The format is simple: we take turns naming places where we'd like to wear our jammies, the more absurd the better. So, for example...

"I want to wear jammies... to school!" ("School? Hahahahaha...")

"I want to wear jammies... to church!" ("Oh, that would be so silly!")

You get the picture. While still a favorite game, I Want To Wear Jammies has outgrown it's usefulness, since Bud has mastered the skills it introduced. Now, in fact, it has turned into something of it's own script, since we tend to visit all the same places every time we play.

This time, though, Bud threw me a curve ball - a place I hadn't heard before: "I want to wear jammies... in space!"

"Space?" I said, my eyes as wide as I could make them. "I want to wear jammies in space, too! Let's go!" So we jumped into his bed (our spaceship), counted down from ten, and shouted "Blast Off!" as we hurtled into the sky.

"WOW! Look at that!" I said, pointing at the lamp. "Look what's out the window!" (Please, Bud, I thought, don't say you see a lamp...)

"Yeah!" said Bud, looking at the lamp. "It's stars!"

"Stars!" I said. Then I pointed to the toyshelf. "And look at that!"

"A moon!" he said, awe in his voice.

"And, oh, my goodness," I pointed to the ceiling. "Out there - it's p-"

"PLANETS!" he shrieked.

Outer space.

One giant leap.

Dissonance and discovery.

Chaos and creation.

Tuesday, October 18, 2005

Happy sadness

Sometimes it's his most difficult feelings that Bud expresses best. Last week I had to work late, and missed the dinner, bathtime, and bedtime routines. Though Daddy and Nana were here to make the process run smoothly, Bud grew increasingly dismayed as the evening wore on.

"I'm sad," he told Nana.

"What makes you sad, Bud?" Nana asked.

"I'm not..." he started.

"I don't..." he said.

"Mom nots..." he tried again.

Then slowly and carefully, he put his thoughts into words: "I don't...want...Mom gone." (And, for the record, if I can put my own thoughts into words for a moment - Mom don'ts wants to be gone, too.)

This weekend Bud and I were headed out for a day of errands, and Daddy was planning a day for himself. Bud seemed fine with the plan; he put on his coat, gave Daddy a kiss, and announced that he was off "to the Red Store!" (Target, of course.)

Bud went out to the garage ahead of me and I dashed back into the house to get something I'd forgotten. When I got to the garage 30 seconds later, Bud was awash in tears. Before I could look for blood or ask what had happened, Bud looked in my eyes and said "I miss Daddy!" We ran back into the house and Daddy wrapped his arms around Bud and held him tightly.

"Do you want me to come with you, Bud?"

"Yes."

"Okay, honey. It's okay."

Bud looked over his shoulder at me and smiled through his tears. "Dad's gonna go with him."

Of course, good parents never want to make their children sad. But sometimes... sometimes it really is worth it.

Saturday, October 15, 2005

Autism is a World

I finally saw the Oscar-nominated documentary Autism is a World. It blew me away.

Autism is a World is the story of Sue Rubin, a 26-year-old woman with autism so severe that for many years she was believed to be mentally retarded. She is mostly nonverbal, but through a communication device she is able to type words, sentences, paragraphs that are not only intelligible, but also profound. Through this technology, she communicates her insights about autism, her reflections on being autistic, and her frustrations with having her inner world of thoughts and ideas trapped under a shroud of disability. It supports - by irrefutable living example - the theory that inside every autistic person is a healthy non-autistic person waiting to come out.

I don't think I have a place in my head to file this one. I haven't had enough time to process it. I don't know what it means. And I don't know what to hope for. Do I hope that Bud is aware of his disability - that he has deep thoughts and feelings that he simply can't (but someday might) express? Or do I hope that he is blissfully unaware - that his perky, happy temperament is Bud through-and-through, and that there's no non-autistic Bud ready to be pulled to the surface? It's a tough question to ponder.

I think this is why, as I read through other autism blogs that are out there, I feel so torn between the "biomedical" folks, who subscribe to the DAN protocol and other interventions focused on finding a cure, and the "neurodiversity" folks, who celebrate people with autism just as they are and who focus their energy in trying to break down barriers to create a world that is fair to and accepting of people on the spectrum. There is significant debate between the two camps, much of it mean-spirited and destructive. But there has also been some civil discourse. A couple of months ago, on his blog Injecting Sense, biomedical proponent Wade Rankin got some healthy conversation going and created a few sturdy bridges. Despite that, this week another autism blogger, neurodiversity proponent Kevin Leitch announced on his blog Left Brain/Right Brain that because of the hostility he's encountered he is no longer comfortable posting about his daughter.

Autism is a World is a remarkable documentary, and it provides an important insight into one woman's experience. But I am reminded again, as I am reminded so often, that "if you've met one person with autism, you've met one person with autism." There are no universals in this universe. Autism is a world - one in which we must each thoughtfully, carefully make our way. But as we sort out this world as it relates to our particular person with autism, we must also create a village in which it's safe to raise all our children.

Tuesday, October 11, 2005

A Wild Ride Up the Cupboards

I recently read, and loved, this essay by Ann Bauer in which she recounts the story of a roadtrip to Fargo with her teenage son, who has autism. The essay prompted me to buy Bauer's first novel, A Wild Ride Up the Cupboards, which tells the story of a woman who (like Bauer) has three children, the oldest of whom begins developing the symptoms of autism when he is about four years old. In Finding Fargo, Bauer writes that the characters in the novels have similarities to her family, but are not her family. Therein, I believe, lies the problem.

I really wish that Bauer had written a memoir. In one short essay, she captures so many moments that I recognize instantly - despite the fact that my autism journey has just begun and she is the second decade of hers. The novel, however, did not have that same resonance for me. I enjoyed it and it held my attention, but I did not recognize it. There is one plot point in particular - one very critical plot point upon which the novel turns - that simply seems artificial. I believe that Bauer used it as a vehicle to demonstrate the level of desperation that her characters felt; I understand the desperation, but I just think it was the wrong vehicle. On the other hand, I have to consider the possibility that this very artifical-feeling plot point is one that is a direct lift from Bauer's life. I reflect on the times in my own life when I've thought, "if this all happened in a movie I'd think it was far-fetched and unrealistic." Life - and life with autism - can be like that.

Bauer also uses a sub-plot that explores her main character's family history and the potential autism connections that may have been floating in the gene pool. Though both very engaging, the sub-plot and the main plot never quite come together. They continue to float, in search of a connection that is never really made.

Perhaps that makes the novel itself a good metaphor for autism and parenting. We parents, driven by love and consumed with the mission to heal our children and create a safe haven for them in the world, search, seek, dig, divine, suppose, consider, react... and, in the process, travel a good many paths that lead to, as Bauer's character with autism dubs a stretch of road he's travelled, "the Nowhere Place." And - when we're lucky - along the way, there are moments of clarity, moments of insight, moments of magic.

Friday, October 07, 2005

Wild moo yonder

Bud's favorite toys are his character figures. He has full sets of his favorite casts - Blues Clues, Teletubbies, Sesame Street - and increasingly he uses these figures to create his own storylines, sometimes even concocting plots in which Clifford the Big Red Dog hangs out with Barney and Baby Bop.

What he really loves, though, is recreating favorite scenes from treasured videos and tv shows. He's a skilled director - framing the shot, working out the blocking, and even doubling as dialogue coach. When he doesn't have a full set of characters or when he needs a guest star, he is happy to improvise and pretend - so the Fisher Price dollhouse mom and dad regularly fill in as the Kratt Brothers when he plays Zoboomafoo, but can also serve as Steve and Joe when both are needed for Blues Clues.

This week he's been taken with a recent episode of Caillou, in which Caillou and his family take a trip on an airplane. Bud has figures of Caillou and his little sister Rosie, but the Fisher Price parents were called into action to play the roles of Caillou's Mom and Dad. The scene that got the most play was the one in which the family was invited to visit the cockpit (which, for some reason that most certainly exists but I haven't yet figured out, Bud insists on calling the "plane-tent.") In Bud's depiction of this scene, the players have consistently been Caillou, Rosie, their Mom and Dad, and a toy cow. Each time, the cow cheerfully greets Caillou and his family, "Good morning, young man! Would you like to visit the plane-tent?" and a tour of the cockpit ensues.

It took a few viewings of Bud's cow-in-the-airplane scene for me to understand what was going on. At first I thought the cow was flying the plane. Then it hit me. The cow wasn't the main pilot.

She was the co(w)pilot.

Thursday, October 06, 2005

We love us the bad grammar

I've posted previously about Bud's unique speech patterns, and his ability to retrieve sentences from his vast store of tv/ video/ computer scripts, change all appropriate nouns, and slide the adapted scripts into "conversation." He has really honed this particular talent to the point that he can often "pass," and even impress his teachers at school.

"It was so sweet," a teacher will tell me at pick-up time. "Today he told me that I could be his mystery friend and he likes my brown hair."

"Mmm-hmm," I'll reply. "Sesame Street Computer Caper."

Or, they'll meet me at the door with "He did a great job letting me know how he felt. He said his throat is sore and he thinks he needs his medicine."

"Yes," I'll say. "Caillou had the same problem this morning."

But sometimes he uses language that really impresses me and shows me that he is definitely making progress. This weekend we were pitching a tent in the living room and, as he tends to do when he's enjoying an activity, he asked me about it in a "pinch-me-so-I-know-this-is-real" sort of way.

"Mama," he asked with a big grin. "What we are set upping?"

My heart swelled. "What we are set upping?" A phrase never uttered by Elmo or Arthur. A real, honest-to-goodness constructed sentence with a mistake that proves without question that Bud recognizes that there are rules that govern language, and that he is learning to apply them.

"We are setting up the tent!" I announced.

"We are setting up the tent!" he echoed.

We continued our work, and his enthusiasm grew.

"Mama?"

"Yes, Bud?"

"What are we setting up?"

Friday, September 30, 2005

Chaos and Creation at Bud's house

There is a soundtrack in our house these days. Either we're listening to the CD player, or we're watching the DVD documentary, or we're singing it in two-part harmony. Bud and I are both in love with Paul McCartney's new album, Chaos and Creation in the Backyard.

Because he is more skilled in this area than I, Bud has pretty much memorized the lyrics to the entire album. He knows the tracks in order and, in fact, often calls them by their track numbers. His current favorite is 9. To the rest of us it is the track called Riding to Vanity Fair, and is uncharacteristically (for McCartney, and for Bud) dark and bitter. It is a song about being betrayed by a friend and, though in interviews McCartney says it's not about anyone in particular, it appears to be directed toward his former long-time PR man, Geoff Baker. The conflict between Baker and Paul's new wife, Heather Mills McCartney, has long been reported in the press and speculation that the negative press Heather has gotten since her engagement to Paul was spoon-fed by Baker has been rampant. McCartney sings,

"The definition of friendship apparently ought to be showing support for the one that you love. I was open to friendship, but you didn't seem to have any to spare while you were riding to Vanity Fair."

Unsurprisingly, one of the interviews in which Heather was called out to defend herself against rumors of fights, pre-nuptial agreements, and conflict with McCartney's daughters, was in the magazine Vanity Fair. You don't need to do a lot of searching to read between the lines. I have to say, the song is a lot brighter when sung in Bud's lilting little voice, but I imagine his teachers wonder what's going on at home when he walks around singing lyrics like, "I’ll tell you what I’m gonna do - I’ll try to take my mind off you. And now that you don’t need my help, I’ve used the time to think about myself."

Another of Bud's favorite tracks is the bright and upbeat English Tea. This song sounds so-much-like-the-Beatles-except-not-the-Beatles that the first few times I heard it I could swear it was The Rutles. It is instantly familiar, like a warm, comfortable, broken-in-just-the-way-you-like-it sweater. It also, McCartney is quick to point out, features the word "peradventure" (meaning perchance, or perhaps) and he wonders if it may just catch on so that people all over the world will start saying "peradventure I'll have a cup of coffee..."

Bud and I are both especially fond of the acoustic Jenny Wren, which is classic McCartney in the Yesterday/Blackbird/Here Today/Calico Skies tradition. It's a quiet song about finding your voice when life's situations can make you feel powerless. And we do a MEAN duet on this one.

My favorite moment on the album is the one-two punch near the end - This Never Happened Before, followed by Anyway. They are both love songs, which is often McCartney at his best. And, like the rest of the album, these tracks are not overproduced. They feel organic and homegrown. It's as though you're sitting around the living room and they slowly waft up out of the fireplace and fill the room with warm air. And both tracks have those McCartney chord progressions that somehow create a physiological response, gently lifting up your heart and slowly rolling it over in a way that is startling and pleasant all at the same time.

Chaos and Creation in the Backyard continues an evolution for McCartney that began with Flaming Pie and continued through Driving Rain. These are the songs that trace his life from Linda's diagnosis and battle with breast cancer, through his loss and grief, and towards a hopeful (if less naively positive) future. This is a more introspective and tentative Paul McCartney, but in many ways it is also a more human, more accessible Paul McCartney. And for a six-year-old boy with autism and a mom who loves him, an album filled with hope and possibility in the face of challenge and despair provides a soundtrack that feels just about right.

Friday, September 23, 2005

Young explorers

Bud's friendship with Clay continues to flourish.

Granted, the extent of their out-of-classroom friendship is walking to our cars at the end of the school day and giving a high-five, but it has expanded to include weaving in and out of trees on the way up the walk, then romping through the woods at the edge of the parking lot. Bud calls this "Exploring the World With Clay" and he is absolutely delighted by it.

Today Clay climbed a tree, and Bud flapped his hands so much I think he left the ground and took flight. Though Clay is as neurotypical as they come, he does not seem to notice Bud's flapping and perseverating on movie scripts. Somehow, this little five-year-old can already see the value in Exploring the World With Bud.

I think they are both in for an amazing adventure.

Sunday, September 18, 2005

Our little liberal

Tonight at dinner I could hear that Bud was reciting something and though it sounded familiar I couldn't quite make it out. I asked him to say it again, and realized that he was blending the beginning of the Pledge of Allegiance, which they say at the start of school, with the end of the Affirmation of Fellowship, which we say at the start of church.

I must admit, I find Bud's version infinitely better than the original. It goes like this:

"I pledge allegiance to the flag of the United States of America. May we know once again that we are not isolated beings, but connected, in mystery and in miracle, to the universe, to this community, and to each other."

Amen, Bud.

Friday, September 09, 2005

A friend, indeed

Bud has a friend.

Clay is a boy in his Kindergarten class. We met Clay at the open house the day before school started, and since his was the name I remembered it was the one I used as we prepared for the first day of school. "And you'll play on the playground with your teacher and the other kids, like Clay..."

Every day after school we have walked from the classroom to the car at about the same time as Clay and his mom. And every day I have prompted Bud to say goodbye to Clay by name. We did this throughout Bud's two and a half years of preschool with a myriad of other children, so it never occurred to me that anything special was happening.

Bud did talk about Clay at home, though. When I asked who he liked at school he named his teacher, then his aide, then Clay. When I asked who he played with, he named his teacher, then his aide, then Clay. Last week he told me he wanted Clay to come and play at Bud's house. But I sort of thought Bud was just trying to give me the "right" answer when I asked a question.

Yesterday as we were leaving school, Bud - because he has the very sweet habit of ALWAYS telling on himself - announced "I can take it home with me!", which prompted me to frisk him and find each one of his pockets stuffed with toy fruit from the classroom. We headed back to the classroom to return the contraband, then I spent some time chatting with Bud's teacher. It was about 15 minutes later when we finally headed back to the parking lot.

As we approached I saw that Clay was sitting on the lawn by our car, and I heard him say "Mom! Here he comes!"

Clay's mom got out of the car and said to me, "Clay insisted that we couldn't leave until he said goodbye to Bud." They had waited 15 minutes, with Clay's mom wondering if we had walked to an appointment somewhere, and with Clay steadfast in his resolve to wait us out.

Bud gave Clay a high five, and they both said goodbye and climbed into their respective cars. It took every ounce of restraint I had to keep from scooping Clay up and smothering him with kisses.

Clay likes Bud. No one told him he had to. No one even suggested that he should. He just likes Bud. He likes Bud for Bud.

Bud has a friend.

Wednesday, September 07, 2005

My love/hate relationship with Eli Lilly

According to internal documents, Eli Lilly - the company that developed thimerosal - knew in 1930 that their product could cause damage and even death in humans. And yet, this mercury-based preservative continued to be used in children's vaccines through the late 90's, despite mounting evidence that there could be a connection between mercury in vaccines and a rapid increase in the incidence of autism. Eli Lilly then climbed into the pocket of Senate Majority Leader Bill Frist, who slipped a rider into the homeland security act of 2002 that shielded Eli Lilly from subpeonas.

Eli Lilly is also the maker of Strattera, the medication that has had the single most positive effect for Bud of all the interventions we've tried so far. After a summer full of trials-and-errors with medication (Ritalin, Adderall, Adderall plus Strattera), we tried 18 mg of Strattera alone. It's been about two weeks and the results have been astonishing. Bud's verbal skills - especially his ability to engage in back-and-forth conversation - have taken a huge leap forward. He is less distracted. He uses less echolalic scripting. He has less sensory overload. His transition to Kindergarten has gone beautifully. And - knock on wood - so far there have not been any negative side effects.

I know for certain it's the Strattera. One day in the past week I picked him up from school, and the teachers looked harried as they handed him off. Bud had his hands over his ears, which I only then realized he hadn't been doing lately. In the car on the way home he was perseverating on a script and I couldn't get him to stop. I tried to figure out what was going on, and it hit me: I had forgotten to give him his medication that morning. (So I had sixty seconds of "I am a horrible mother," immediately followed by the smug satisfaction of having (inadvertantly) run my own blind trial.)

I will admit there is a dark place in the back of my mind that entertains the conspiracy theory that goes like this: Eli Lilly is a for-profit corporation developing drugs used to manage the symptoms of neurological disorders. In a capitalist ecomony, profit is driven by supply and demand. In order to maximize profit for their product, Eli Lilly must strengthen the demand for it. An increase in the incidence of neurological disorders means an increased demand for their product, which means an increased profit. Eli Lilly has another product which could increase the incidence of neurological disorders...

But, really, if I want to continue to get out of bed in the morning and make it through each day, I can entertain the thought, but I can't really go there. For right now, Strattera is having a tremendous effect on Bud, and Eli Lilly will continue to get my money. But my mind, and my heart, remain conflicted.

Tuesday, September 06, 2005

I'm speechless

... and perhaps Barbara Bush should have been as well, as she toured Houston's Astrodome on Monday and said:

"What I'm hearing, which is sort of scary, is they all want to stay in Texas. Everyone is so overwhelmed by the hospitality. And so many of the people in the arena here, you know, were underprivileged anyway, so this is working very well for them."

Yeah. Hurricane devastation... good work if you can get it.

Monday, September 05, 2005

Smackdown

Here's to Keith Olbermann!

Blame floats to the top

Shame on George Bush for trying to pass the buck and place the blame for the tragically incompetent response to the Gulf Coast devastation on "state and local authorities."

Here's what "locals" were saying in June.

According to Mike Tidwell on yesterday's Meet the Press, the pricetag for the Coast 2050 project, which has been a proposal since the mid-90's and which would have prevented this tragedy is 14 billion dollars, or about two weeks spending in the Iraq war.

How do you feel about your $600 tax refund now?

Friday, September 02, 2005

Eye of the storm

Like the rest of the country, I am riveted by the news coming out of the Gulf Coast. And like many others, I am horrified by the overwhelming lack of response from the federal government and the profound lack of leadership from the President.

If you have not heard last night's radio interview with New Orleans Mayor Ray Nagin, take twelve minutes and listen to it (click on Mayor: "Get Off Your Asses") then tell everyone else you know to listen to it as well. Demand that elected officials get off their asses and do something fast. And once the crisis has passed, make a statement at the ballot box. This nation cannot withstand more of the same.

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.