Friday, March 31, 2006

Wherefore art thou, Clay?

I love the poetry in Bud's language.

Spring weather is finally here, so today instead of driving to the school door to pick Bud up I parked in a more distant parking lot - the one where we parked in the fall when Bud played with Clay after school.

As we approached the car, Bud said enthusiastically, "Mama, can I go exploring?"

"Sure you can!" I said.

His enthusiasm never dimmed, but he said, "Clay is not here."

"No, he's not." I said

"It's kind of sorrow," Bud said very matter-of-factly. "Parting is such sweet sorrow." And then he skipped off to play.

Now, granted, he wasn't quoting Shakespeare directly; Bud hasn't actually read Romeo and Juliet. He was quoting Monster Clubhouse, which was quoting Shakespeare. But really - sorrow? I didn't know Bud knew what "sorrow" meant.

And, sure, it's a script - but of the dozens of hours of scripts that Bud has in his head, that is the one he pulled out: "Parting is such sweet sorrow." I wouldn't be so sad to leave you if I wasn't so happy when I'm with you.

He doesn't talk about it much, but Bud misses his friend. And he's right. Parting really is such sweet sorrow.

Thursday, March 30, 2006

What we're reading

One of the most exciting developments in our world over the past couple of months is that Bud has started reading. He is sounding out letters and slowly stringing them together until *PING* he recognizes them as words - "ba-ba-ih-baih-baih-ga-ba-ih-ga-ba-ih-g-baihg-BIG!"

He is VERY proud of himself, and there's just about nothing better than that. He's also really interested in the process. Part of his motivation comes from the fact that he has discovered a real utilitarian value to being able to spell out words: it allows him free reign to program the TiVo all by himself.

Last week as I was getting ready for work, Bud called up the stairs "Mama, I need help!"

"What do you need help with?" I called back.

"I need help to tape Jack's Big Music Show!"

It's not unusual for Bud to ask me to tape things for him, so I headed down the stairs to help him. I stopped short, though, when I entered the living room and saw the tv screen. Bud had used the miper to maneuver to the right screen to enter the program title (which is no easy task in itself), and then had clicked on each individual letter to type out the program he wanted to tape. On the screen in front of me was:

JACKSBG

The boy is amazing. Since that time, he has mastered the art of Tivo as well as the spelling of Jack's Big Music Show, It's a Big Big World, Teletubbies, and Boohbah.

It's not all about the tv, though. Bud also loves books. He loves reading together, and he enjoys spending quiet time alone with his books looking at the pictures and talking to the pages. He is passionate about his favorites - and I have to say, he has good taste. I think I enjoy his favorites as much as he does.

And so, in tribute to Bud's emerging literacy, I present le creme de le creme: Bud's Best-Loved Books.

Daddy, Could I Have an Elephant? by Jake Wolf
This is hands-down Bud's favorite book. It follows a boy named Tony through his morning routine as he tries to entice his father with great ideas he has about different pets they could get. Tony's dad appears to be a single parent, which has prompted questions from Bud ("Where's Tony's mom go?") and has given me the opportunity to talk to him about the many different ways that you can make a family. Interestingly, in one of the illustrations we see a framed photo on the bedside table showing two adults and a child, prompting me to create my own elaborate backstory. (Yes, I know, I really need to get a life.)


And Here's To You! by David Elliott
This beautiful book is an instant classic, and it has become the gift I give to newborns to welcome them into the world. Bud adores its playful poetry and unique exploration of the animal kingdom. His favorite line: "Here's to the cats! The purring people - cats! Here's to the creeping ones - the get you when you're sleeping ones!" About a year ago I heard Bud "reading" the book to himself in the next room: "Here's to the cows! The GETCHU when you're sleeping ones! Here's to the bugs! The GETCHU when you're sleeping ones! Here's to the bears! The GETCHU when you're sleeping ones!" (Myself, I've never much cared for the get-you-while-you're-sleeping bears.)


Feast For Ten by Cathryn Falwell
This simple counting book was one of the first that Bud memorized and could "read" to me. He still loves it. He seems particularly drawn to the family dynamics, and eagerly points to each family member to determine the equivalent person in our own family. As this family has five children and we only have Bud, we have to employ cousins in our version of the story... but I suspect that that's all part of the fun.


Cows Can't Fly by David Milgrim
This book really captures Bud's imagination, as it tells the story of a boy whose picture of flying cows inspires an entire herd to take to the sky. Alas, none of the adults can be bothered to look UP, and the boy and his dog are the only witnesses to this magical event. I especially love the conversations that Bud and I have about the boy's mother, who is working with a power drill, and his grandmother, who is working as a mail carrier.


Giraffes Can't Dance by Giles Andreae
Two of Bud's very favorite things - jungle animals and dancing - are central to the plot of this beautiful book about being different. Bud loves the monkeys who cha-cha. I love the message that the story sends to my boy about finding his way in the world. And the best part is, I can finally read the whole thing out loud without getting choked up.



The New Adventures of Curious George by Margret and H.A. Rey
We took this book out of the library so many times that I just went ahead and bought a copy. The book is a compilation of more recent stories about everyone's favorite "good little monkey". The stories are as sweet as the originals, but have the added bonus of featuring doctors and mayors and other important people who are women and people of color. Though Bud enjoys every story, his favorites are Curious George Makes Pancakes and Curious George Goes to a Movie (and no, the irony has not been lost on me.)


Caps for Sale: A Tale of a Peddler, Some Monkeys and Their Monkey Business by Esphyr Slobodkina
I loved this book when I was Bud's age, and I love that he loves it just as much as I did. It is a gentle story that reads like (and may well be) a traditional folk tale. Bud loves the monkey-see, monkey-do shenanigans on which the plot turns, and we both delight in shouting out the peddler's lines together... okay, the peddler's lines AND the monkeys'.



The Best Picnic Ever by Clare Jarrett
Bud loves that the main character in this book is named Jack, especially now that he can READ the word "Jack"... as in, Jack's Big Music Show. But he also loves that as Jack waits for his mom to prepare their picnic, he passes the time playing with a giraffe... and an elephant... and a leopard... Now THAT is Bud's idea of a good time! As long as we're just pretending.


Just Another Morning by Linda Ashman
This book gorgeously, delightfully crawls inside a young boy's imagination and takes us along on his wild, exciting morning expedition. Sometimes when Bud and I read the book we talk about how the "giant" is really the boy's Daddy and how the "monster" is really the vacuum cleaner, and Bud scurries to find his own "wild" animals so that he, too, can sleep in a zoo. But most of the time we just hold on tight and enjoy the adventure.


Peanut Butter Rhino by Vincent Andriani
and
P.J. Funnybunny Camps Out by Marilyn Sadler

These are two seemingly unrelated books, but in my mind they are connected. Peanut Butter Rhino tells the story Rhino, who is preparing for a picnic when he accidentally (an unknowingly) sits on his peanut butter sandwich. He spend the story looking for his sandwich, while Bud squeals with glee, "It's on his BUM!"

In P.J. Funnybunny Camps Out, P.J. and his male friends go camping and exclude the girls, saying "Camping is not for girls." However, in a twist ending (don't keep reading if you don't want to ruin the surprise) we discover that the girls have posed as ghosts and scared the boys, proving that the boys may not be as tough as they thought... nor the girls as weak.

Neither of the books is particularly compelling to me as a work of children's literature. But they are both invaluable learning tools as I work with Bud on perspective-taking. As Bud and I read them together, it is easy to talk about how we know where the peanut butter sandwich is ("On his BUM!"), but how Rhino thinks it might be up that tree or in this cave. We have similar conversations about the fact that we know that Honeybunny and Donna Duck were pretending to be ghosts, but that P.J. and his friends believe that the ghosts were real. Bud continues to struggle with the concepts, but the allure of these books keeps him engaged in the conversation.

So there you have it - the best in books from Bud and me. Lots of other books go in and out of vogue, but these are the ones that continue to find themselves on the bedside table. We hope you liked our choices and, hey - thanks for reading!

Monday, March 27, 2006

More than words

I really appreciate the response that I got to my last post. The diversity of opinion reflected in the comments is fascinating to me, and it has given me a lot to think about.

Clearly the negative associations that I have with the word "stim" are not broadly held, especially - as several people pointed out in their comments - by adults who are themselves autistic. I've been thinking about that a lot, and am reminded again of some concepts from my Interpersonal Communication class, in the unit in which we discussed perception.

In communication theory, "perception" refers to the way that we take in information and the way that we make meaning of that information. Many of the perceptual processes we use occur automatically - we notice what we notice, and it means what it means to us. We are conditioned to make meaning of our experience without even being aware that we're doing it.

According to Joseph DeVito in The Interpersonal Communication Book, "One frequently used rule of perception is that of proximity or physical closeness: Things that are physically close together constitute a unit." So, for example, when we see

555 3344

many (but not all) of us think "telephone number." Though we have no real reason to think that "555 3344" is anything other than a random string of numbers, our minds resist that kind of chaos. The physical proximity of the 5's make us see "555" as one unit; the space makes us see "3344" as a separate unit. And different perceptual processes (what DeVito calls "schemata") make many of us in the U.S. look at a unit of three numbers followed by a unit of four numbers and think "phone number." Our previous experience with "555" as the exchange used for fictional numbers in movies and books only strengthens our inclination to view these numbers in that specific way.

But things don't have to be physically close to each other to trigger the perceptual rule of proximity. We also use a temporal rule, or as DeVito says, "Things occurring together in time belong together." Kristina at Autismland has written about this phenomenon from a literary perspective in her posts about metonymy.

As a result of the "temporal proximity" rule, DeVito says, we perceive verbal and nonverbal signals sent at the same time as being related to each other. Taking it a step further, I consider the way that the Dire Straits song Money for Nothing always reminds me of the bookstore I worked at for a brief time in the summer of 1985, simply because the song was at the top of the charts at the time.

These temporal connections can be powerful, even if we are not consciously aware that we have made them. I was reading a wonderful biography of Paul McCartney when my daughter died. The bookmark remains untouched halfway through the book. I can't read the book now, because the book itself makes me sad. That connection is so powerful, in fact, that when I opened the new Beatles biography that my husband bought me I found myself unable to read it. It reminded me too much of the McCartney biography and it, too, made me sad.

I've been thinking about temporal proximity as I've considered my reaction to the word "stim." I was introduced to the term when Bud had just been diagnosed, and I was confused and unsettled about it. I was introduced to it in posts written by parents who wanted their children's behavior to stop, and their writing was infused with frustration, helplessness, hopelessness, and anger. As I wrote previously, I didn't know what they were writing about and I ended up feeling panicked, more confused, and even afraid.

That is the connection - the gut-level reaction - that I have to the word "stim." It has nothing to do with the behavior - nothing, really, to do with the word itself. Just as the McCartney biography is not sad, the word "stim" is not angry. And yet they each feel that way to me.

The reverse is true of the word "dysregulation" for me; those temporal connections are with things like excitement, enthusiasm, insight, understanding, and respect. I first heard the word at a SCERTS workshop, at an important time in the evolution of my thinking about Bud's autism. It was this workshop (and a previous one on RDI) that allowed me to think differently about my reactions to Bud's behavior and, I believe, to be more respectful of it. Prior to that time, I had only been exposed to approaches that sought to address "problem behaviors" like "aggression" and "stimming" - the very terminology of which seemed to make value judgments, i.e., "this child's behavior is a problem, so this child is a problem." (The unspoken statement, of course, being "and problems are bad.")

But in the SCERTS model, the words "regulation" and "dysregulation" are intended to be value-neutral. What I like about using them to consider Bud's behavior is that instead of focusing on the "problem" that his behavior might be creating for us, they challenge us to focus on the problem that the environment we have created might be for Bud.

A recent example from school: Last week Bud had a difficult time transitioning from his classroom to a session with his Occupational Therapist. He didn't want to go with her, despite the fact that it was time for his session and despite the fact that he likes his OT very much. As his OT led him out of the room, Bud turned to her and yelled (very uncharacteristically) "I'M GOING TO BITE YOUR HAND!" They pressed on, and further down the hallway Bud took off the Sherlock Holmes hat he was wearing and hit the OT with it.

At pick-up time, Mrs. H and I talked about what happened. I believe that if we did not have the SCERTS language of "dysregulation" we would have had a conversation about Bud's "aggressive behavior". Instead, we had a conversation about what might have caused Bud to feel dysregulated to the extent that he felt like his best options were threatening and hitting. We talked about the difficulty he has had sleeping recently and how tired he has seemed, and we talked about the fact that Bud had not gotten any prior notification that this transition was coming - something he has come to expect in school.

Once we had considered those factors, our problem-solving was not about how to make Bud stop being aggressive; it was about how I can help him get more and better sleep, and about how Mrs. H can insure that he will get prior notice before he's expected to make transitions. In my opinion, using the philosophy and the language of "emotional regulation" helped us to be more respectful of Bud.

That being said, I definitely understand why "dysregulated" is a jarring, clinical word to people who don't have the same associations with it that I do. I looked up the "dys" prefix online. Two of the definitions listed were "Abnormal" and "Bad." Both offensive, and both entirely inappropriate when making reference to Bud.

But it is the third definition of "dys" that I'm using when I use the word "dysregulated": Difficult.

The SCERTS model defines "regulation" as being "available for learning and engaging." So when I say that Bud is "dysregulated" I mean that he is having difficulty being available for learning and engaging. He might be having difficulty because he is overtired, or because people are talking too quickly, or because his environment is overwhelming - but whatever the reason, he is not in a state in which anyone can tell him to "sit down and pay attention" without making the situation a whole lot worse. Instead, our efforts need to focus on helping him to regulate - to become available again - before we can make any requests of him.

I hope that when others read this blog, they will understand that this is the spirit and the philosophy behind the words that I use. "Dysregulated" is not an ideal term, as recent conversations have indicated. But it's the best one I have at the moment. And regardless of the mixed reactions to the word, Bud's reaction to the philosophy is very positive. It seems to work for him. And if it works for Bud, it works for me. At least for now.

Friday, March 24, 2006

Choosing my words

When we first got Bud's PDD diagnosis, I started lurking on listservs and message boards for parents of kids on the spectrum, and I kept seeing references to "stims": "he spent the afternoon stimming"; "how do I stop all the stims?"; "we took it away because he was getting stimmy"; stim, stim, stim, stim, stim.

I had no idea what they were talking about, but I could tell from the way they were talking about it that "stimming" was a terrible, terrible thing and I was very glad that Bud did not do it.

It honestly took me a long time to realize that when they talked about "stimming" they were talking about many of the things Bud did all the time: flapping his hands, humming, or running laps around the house when he was excited; repeating phrases and quoting videos; listening to clips from a song, then skipping back to hear the clip again and again and again; rewinding videos to watch favorite scenes, or segments, or moments, over and over.

So I was confused. Why were they being so negative about it?

A lot of time has passed since then, and I now understand the challenges of perseverative behavior better than I did then. Some of the self-stimulatory behavior that Bud exhibited along the way included hitting himself in the head or knocking his head against a wall when he was frustrated, and forcefully kicking the wall when he had trouble sleeping. So I understand why some of the behaviors are of concern. But, I have to say, I still don't like the word "stim."

Last semester I taught a class in Interpersonal Communication, and one of the concepts we discussed was word choice. I did an exercise with the class in which I divided them into three groups and handed each group one of three sentences:

Sheila is careful with her belongings.

Sheila is meticulous with her belongings.

Sheila is fussy with her belongings.

"What is your impression of Sheila?" I asked each group. The people who knew Sheila to be careful had a mostly positive view of her. Those who thought she was meticulous had mixed views. Those who saw her as fussy had a very negative view.

We tried some other examples:

The youthful Senator took the stage.

The young Senator took the stage.

The inexperienced Senator took the stage.

and

Robert is economical with his money.

Robert is thrifty with his money.

Robert is cheap with his money.

The point of the exercise was to illustrate that words have two types of meanings. They have denotative meanings - the dictionary definitions; but they also has connotative meanings - the associations with the word that evoke emotional - even visceral - reactions in us, and that create a context in our minds when we hear the word.

Examples of the effects of connotative meaning are everywhere. Watch a few minutes of Fox News, then switch over to CNN and listen to the words they use to report on the very same stories. Then turn on NPR to hear what they're saying. The differences in word choice are fascinating.

So the issues I have with discussions about "stimming" are not about the behaviors being discussed; they are about the word itself. To me, the word "stim" has a powerful connotative meaning: "stim" says unusual, disconcerting, abnormal, dangerous.

But Bud's behaviors are none of those things. I think about his proclivity to rewind. Since he learned to master the TiVo remote, he sometimes engages in sheer festivals of rewinding and rewatching. Just this morning he was watching (and rewatching and rewatching) a 1 or 2-second clip from It's a Big, Big World in which a character said "Sure!" in a funny voice.

"Sure!"

blip-blip-blip

"Sure!"

blip-blip-blip

"Sure!"

blip-blip-blip

Then Bud added his own dialogue. He said to the screen: "Do you want to play?"

"Sure!"

blip-blip-blip

"Do you want to go upstairs?"

"Sure!"

blip-blip-blip

"Do you want some breakfast?"

"Sure!"

And on it went.

Was it stimming?

"Sure!"

But it was also pretend play.

And it was practice. It was a predictable conversation that allowed him to try a variety of permutations to see how they sounded. It was a safe way to test the waters of interaction. It was really very cool. And it makes me wonder: when he was rewinding before he had expressive language, what was going on in his mind?

Or I think about 2-year-old Bud and his fascination with the CD player. He would listen to the introduction of a song, and then just as the singer was about to sing the first note of the lyrics he would click back to the start of the song. Again and again and again. I never really thought of it as strange. Bud loves music. He loves music. So he was learning the songs - and he was learning them the way he wanted to know them. He was learning the bass lines, and the drum beats, and the pauses, and the piano riffs. Some people walk in the park and hear the birds singing. Others hear the robins, and the cardinals, and the blue jays, and the sparrows. It's about having interests. It's about having passions.

I've read a lot of wonderful posts by other bloggers that have contributed to my thinking on this. And more than once I've posted a comment that said something like "I don't really like the language of stim." It was the connotative meaning of "stim" that I was talking about in those comments - the way that the word somehow pathologizes the behaviors. Because the thing is, sometimes Bud's behaviors are disruptive and unhealthy for him; but sometimes they keep him in balance. And isn't that true for most of us? Isn't my morning coffee one of the things that keeps me alert and focused? And don't I get jumpy, irritable, and easily distracted if I've had too much?

The thing I keep coming back to in my mind is this: The words we use matter. Words shape our perception. And perception shapes reality.

So Bud will continue to flap, he will continue to perseverate, he will continue to rewind, repeat, and recite.

He will also attend to details, pursue his passions, hone his strengths, explore his interests, and perfect his talents as he learns to self-regulate.

He will have behaviors that enhance his life and behaviors that become problematic for him.

But he will not "stim" - not to my eye and not in my mind.

And, definitely, not on this blog.

Thursday, March 23, 2006

Wet's get going!

I was puttering around the kitchen this morning gathering my things so I could go to work, and Bud was in the living room settling in with his grandparents for a few hours before it was time for him to go to school. My dad saw that I was almost ready to leave and asked, in his very Papa way, "Are you off to see the wizard?"

Bud came flying into the kitchen with a big smile, booming "You're off to see a wizard??!! Can I come too???"

"Oh, honey," I said, letting him down easy. "I'm not really going to see a wizard."

"Okay," said Bud, undaunted. "How about an iguana?"

Monday, March 20, 2006

Dr. Strangetalk or: How I Learned to Stop Worrying and Love Echolalia

I've decided to write the post I desperately wanted to read a few years ago when Bud's speech was exclusively echolalic, when I was split down the middle, half of me thrilled to hear the sound of his voice and the other half of me anxiety-ridden by the thought that I should find a way to make him stop obsessively quoting videos. I felt like I was standing at a high-stakes crossroad without a guide map, and I had the overwhelming feeling that whatever I did at that very moment would lead to a happy, rewarding life for Bud or would unleash the doomsday machine that would spell the end of life as we knew it.

It started the summer before Bud turned three, on a family trip to a Sesame Street-themed amusement park in Pennsylvania. Bud was in Early Intervention but had not yet gotten a diagnosis. We knew he had a speech delay, but beyond that we just thought he was a little quirky in a high-maintenance kind of way. In retrospect I recognize that much of the language he did have then was echolalic (singing songs word for word, falling down and saying "areyouokay?"), but I didn't really see it at the time.

The issue came into much clearer focus at the theme park, though. It was the first time I remember Bud having the "I love this, make it stop! I hate this, I want more!" reaction that I have come to know as one of the hallmarks of dysregulation for him. Bud was simultaneously enchanted and overwhelmed in an overactive, unfocused sort of way. And throughout our time at the park, our mostly nonverbal boy kept repeating the same thing over and over: "Duh-No! Ahssiswih dunna. Deedeedee! DUWAH!" I couldn't understand what he was saying, but there was something about the cadence of his speech that triggered recognition in the recesses of my mind.

On the same trip, our hotel television was one that powered on to a hotel "preview" channel with a cartoon cowboy who welcomed us and told us what to expect during our stay. Bud was fascinated with this cowboy, and after a couple of days in the hotel he started mimicking the character's speech. My immediate reaction was one of panic, and the word flashed in my brain: ECHOLALIA. I began to pay more attention to the other phrase that I kept hearing from Bud throughout the trip: "Duh-No! Ahssiswih dunna. Deedeedee! DUWAH!" and kept running it through the filters in my mind - what did it mean?

I remember the moment that I figured it out. I was strapping him into his car seat, and he was clutching several of his Sesame Street figures (one of his quirks was the tendency to carry small characters with him wherever he went.) I started saying the script along with him, paying close attention to the tone, the inflection and the emphasis he put on each syllable, and it hit me: Baby Bear, from the beloved Elmo's World video - "Behold! Artist with crayon! trill of music Drawing!"

I was fascinated and horrified.

From that point on, I began to tune in more intentionally to the cadence of the sounds he made and I came to recognize that he was repeating scripts from favorite videos frequently. As his speech grew less garbled, it became even more obvious. At first the scripts did not seem to serve a purpose beyond their play value and their self-soothing qualities. But he was talking and scripting more and more and more.

That's when I first encountered that crossroads feeling. What should I do? If I try to make him stop scripting will he just stop talking altogether? Will he feel like I'm telling him that he is not good enough? But if I just let him keep scripting will it drive him further and further into a fantasy world, and further and further away from the real one? I'm sure I must have read things. I'm sure I must have talked to people - his EI specialist, his doctor... someone! - but I have no recollection of any advice that I got about it.

I just remember thinking that the most important thing - the thing that would keep him in this world, that would make him prefer the real world to the fantasy world - was connection to other people. You can connect without language, I reasoned, but language without connection is useless. And so, the content of his speech became a secondary concern. My primary goal, instead, was to use his speech to connect with him - however and whenever I could.

So I learned the scripts, and climbed into his fantasy world with him. I tried to engage him in dual-scripting - you say one line, I'll say the other - to approximate the reciprocal flow and give-and-take of conversation. I worked with him to develop scripts of our own - private jokes that we shared with each other. And whenever I could, I looked for the moments when he was well regulated and I tossed a little chaos into the creation, hoping to provide just enough dissonance to move him forward a bit, to expand the possibilities of language, to help him consider that there could be more to talking than scripting alone.

Bud continued to script, but as time passed I noticed a clear evolution in his scripting. It became less random. He began to assess his surroundings and select the script he had that best fit the circumstance. So if he wanted to play ball, he would approach us with ball in hand and say "Quick, Dipsy. Help Laa Laa catch the ball."

After more time passed, he began to modify his scripts. The sentence structure would remain intact, but he would swap out the pertinent details, so that "Quick, Dipsy. Help Laa Laa catch the ball" would become "Quick, Daddy. Help Mama catch the ball." As his talent to modify scripts became more sophisticated, it allowed him to interact and be understood by people outside our home. His speech patterns still sounded stilted and awkward to "outsiders," but they could finally understand the basic gist of what he was trying to say - and it seemed that this new milestone became a real turning point for him.

Bud's confidence seemed bolstered by his ability to be understood, and allowed him to start taking risks with language and start putting words together on his own. Using creative, spontaneous language was much more difficult for Bud and took a great deal more time than it did for him to assess a situation, mentally thumb through hours of memorized scripts to find the most relevant script to the given situation, and modify the script by swapping out a few details. As a result his creative speech was much slower and less polished than his modified scripts. But, in time, "Quick, Daddy. Help Mama catch the ball" became "Daddy ball?". And slowly, slowly, two-word and three-word phrases became sentences, and sentences became conversations, and personal pronouns began to match, and the rules of grammar began to emerge.

It was in the midst of this transformation that I attended a workshop led by SLP Barry Prizant, and during one of the breaks I told him about Bud's increasingly complex modification of movie scripts. Dr. Prizant told me that Bud was using "mitigated echolalia," and that it was an excellent prognostic indicator for future language development.

"I'll bet you'll start seeing spontaneous language soon," he said.

"We already are, " I said.

Dr. Prizant smiled and said, "And I think you'll probably see a lot more." He pointed me in the direction of some great articles on echolalia. One of them was Finding the Words by Marge Blanc in the May-June 2005 issue of Autism/Aspergers Digest Magazine. The article talked about "gestalt language acquisition," or exhibiting delayed echolalia with whole sentences repeated verbatim. I read the article with fascination: it seemed that she was writing about Bud.

And there in the sidebar was a quick overview titled The Stages of Gestalt Language Acquisition. It could have been titled The Stages of Bud's Use of Language. It read:

Stage 1: Communicative use of language gestalts (learned and spoken in their entirety) - "Let's get out of here!", "Want some more?"

"Quick, Dipsy. Help Laa Laa catch the ball!"

Stage 2: Mitigation into chunks (a) and recombining (b) - (a) "Let's get + out of here!", "Want + some more?"; (b) "Let's get some more!", "Want out of here?"

(a) "Quick + Daddy. Help Mama + catch the ball!"
(b) "Daddy catch the ball!"

Stage 3: Isolation of single words and morphemes, and beginning generation of original two-word phrases - "Get...more!", "Want...out?"

"Daddy ball?"

Stage 4: Generation of more complex sentences - "I got more.", "I wanna go out?"

"I playing ball with you, Daddy!"

Bud still does a lot of scripting, especially when he's dysregulated or when he is focused on pretend play. But he also uses a lot of spontaneous language, with increasing frequency, in a greater variety of situations, and with a greater number of people. He is really beginning to understand this confusing morass we call "language."

And so the movie quotes, the sound bites, the long streams of monologue and dialogue he recites verbatim - they are no longer the enemy. I am no longer standing at a high-stakes crossroad. Bud has chosen his path and I've joined him on it. Our traveling companions may include Blue and Joe, Snook and Bob, Jack and Mary, Zack and Weezie, Zoboomafoo, the Teletubbies, and the entire cast of Sesame Street, but we travel secure in the knowledge that we are moving forward, together, toward a very promising future.

Sunday, March 19, 2006

Unimpeachable?

Gary Trudeau's political commentary in today's Doonesbury would be hilarious if it weren't so frightening.

Lewis Lapham provides a more thorough analysis in his essay in the March issue of Harper's.

The Lazarus fish

It seems that Dorothy has returned from the brink of death. She's back in her bowl, happily cohabitating with Stevie, swimming and eating as if nothing ever happened. Bud has been spared the heartache of loss for now.

I have to say, when you folks send positive energy out into the universe, you don't mess around!

In other news, despite his protestations to the contrary, Bud ended up being a lot of fun yesterday, as he beat me soundly in a string and a half of bowling.

Saturday, March 18, 2006

On goldfish, monkeys, and the right to be boring

It seems we may not be having a goldfish funeral this weekend after all. This morning, Dorothy was upgraded from critical to serious condition. She remains in her isolated bowl, which is now just a watery ICU, but she's perky, she's eating, and her eyes don't seem as filmy as they were. Maybe she just needed a break from crazy little Stevie.

Whatever the case, Bud has not made mention of Dorothy since yesterday's promise that she'd "feel better soon." She is not on his radar, and he is not at all concerned about her. So, my preparations for the possibility of her passing have all been internal. I'd left a question about it for Mrs. H in Bud's school-home notebook, and she wisely suggested that it will be important to read Bud's feelings about it in the moment: "Quite often, kids can be matter-of-fact and have an "oh well" attitude. Sometimes they say "oh well," but are truly distressed about it. And sometimes they say "oh well" today, but three weeks later it may come back as nightmares or random sadness." So perhaps there is a danger in being too prepared as well, as it might lead to imbuing the moment with too much unnecessary fanfare.

I do think we'll avoid the ceremonial flushing of the carcass when the time comes, however. Bud already has enough tricky issues associated with toileting; we just don't need to complicate that any further. But I don't have a plan beyond that - a burial? a private flush? I'll just have to figure it out when the time comes.

Since we didn't need to spend any time last night talking about Dorothy, I spent the evening badgering poor Bud about today's activities instead. Bud and I are both fans of the Curious George books. We both adore Jack Johnson's latest single Upside Down, which comes from the Curious George soundtrack (in fact, now that we've downloaded it from Itunes it is the only song that Bud wants to hear when we are in the car). So, I thought, what could be better than a Saturday trip to see the Curious George movie? Bud did not agree. He adamantly refuses to see it. We've seen movies in the past and he has enjoyed it, but the last time we tried to see one we had to leave the theater (in tears) during the previews. (What rocket scientist thought it was a good idea to show a dark Harry Potter preview before a movie with a G rating?) And, it seems, that was that for Bud. He's through with the movie-going experience.

I really would like to see Curious George, though, so I pushed a little harder than I normally would and continued to bring it up throughout the evening.

"Come on, Bud," I said, finally. "Let's see Curious George tomorrow. I know that it would be fun."

Apparently that was what it took to fray Bud's very last nerve. He spun around to face me, and with a mix of exasperation and anger he shouted "I DON'T HAVE TO BE FUN!"

Point taken.

So I'm not sure what we'll be doing this fine Saturday. I don't think we'll be trying to dig in the frozen ground of the backyard to bury a lost goldfish. There's not much chance that we'll be seeing any movies. But there's one thing for certain: we will definitely not be having fun.

Friday, March 17, 2006

Life lessons

Bud's goldfish, Dorothy, is dying.

She has been unwell for a while - bulging in the wrong places, listing to the side - but last night she took a discernible turn for the worse, her eyes getting white, her gills struggling to open, her fins barely stirring. We moved her into a private bowl, away from her friend Stevie, and into the bowl that will act as her goldfish hospice. This morning she looked even worse and poor Stevie, alone in his bowl for the first time, seemed distraught.

So this morning I was presented with a dilemma. Bud had not noticed Dorothy's absence from the bowl. I could easily have asked Nana to slip out while he was at school and buy a replacement Dorothy, sparing Bud the tragedy of losing his beloved pet. And while I want to protect Bud, while I want to keep him free from unnecessary pain, I also want him to live fully -and loss is a part of life. Dorothy will not be the only loved one that Bud will lose in his life. And as difficult as her loss might be, it will not be the most difficult loss he will experience. It is time to help him start to develop the skills that will help him withstand the greater losses when they eventually come.

I didn't want to start the difficult conversation before I sent Bud off to school, so I just started laying the groundwork.

"Dorothy is very sick, Bud," I said.

"Oh no! My fish!" he yelled, running to the bowl, where Stevie swam in confused circles.

"She's over here in this bowl, honey," I said, holding it low so Bud could peer in to see the barely-moving goldfish. "She is sleeping here so Stevie doesn't get sick too."

Bud put his face close to Dorothy's water.

"That's okay, Dorothy," he said. "You feel better soon." Then he kissed the air above her bowl with a loud smack.

My throat tightened, but I reminded myself, now is not the right time. I put Dorothy's bowl back on the counter, where she was out of Bud's sight.

So very soon - tonight, or perhaps tomorrow - it will be time to introduce my son to one of the most difficult parts of life: the ending. I'm thinking about how to phrase it, about which words will bring comfort, and about what I can say that won't make him panic the next time that he, or someone else he cares about, gets sick.

I imagine that I will take my cues from him, and work hard not to plant emotions that are not there. I'll try not to talk too much. I'll try to listen to what he's not saying as much as to what he is. But, mostly, I will just be with him. Because, ultimately, when we're grieving and we're struggling to understand our own grief, it is the comforting presence of other people, the space and the permission to feel, and the knowledge that even in our darkest moments we are not alone, that we really need most.

Perhaps that lesson is the final gift that Bud will get from his very first pet.

Thursday, March 16, 2006

Healthy competition

Have I mentioned how much I love Bud's team at school?

The learning specialist who works with Bud called me tonight. At home. During her time off. To gush about my son.

I love that.

She said she was calling from Cloud Nine. Bud has had a great couple of days with her. Yesterday they were working on Starfall together, and it prompted all kinds of spontaneous, unscripted, engaged and focused language in Bud.

And if that wasn't great enough, today when she visited his classroom he flirted with her! He tapped her on one shoulder, then darted away. Then he came back and tapped her on the other shoulder and darted away. And then he peeked at her (in that flirty way he has) from across the room. She was delighted - and, she said, Mrs. H was jealous.

Mrs. H was so jealous, in fact, that later in the day she rushed into the Special Ed room to report that when she was helping Bud in the bathroom, he flipped off the light and shouted "Let's have a dance party!"

"Oh, yeah" said Bud's Occupational Therapist, with a smile, "Bud and I have been dancing together for weeks."

So, it seems there's a bit of competition going on at Bud's school. It's okay, though; it's the best kind of competition.

It's the kind in which everyone wins.

Saturday, March 11, 2006

Cha-ching!

For those keeping score at home:

The crisis has... er... passed.

Uncommon cents

So, I'll try to be delicate here.

This morning Bud was playing a diving game with a penny in the bathtub. He'd close his eyes, toss the penny, then go diving to find it. Every time I suggested that it was time to get dry, he'd request five more minutes to play. So, I admit it, I was getting bored and wasn't paying careful attention to his every move.

That's when I heard, "Where's my penny, Mom?"

I looked in the tub. No penny.

"I don't know, Bud. Where is it?"

"It's in my bum."

"WHAT???"

"The penny's in my bum. Can you get it out, please?"

"It's in your BUM?!"

"Yes. Can you get it out, please, Mom?"

Oh. My. Goodness. Don't panic. Don't laugh. Don't make him anxious.

I scooped him up and dropped him on the toilet. "Push, Bud," I told him. "Push like it's a poop." He pushed and strained and... nothing.

"Get it out, Mom, okay?"

I got him some apple juice to help get things going, then called the doctor's office. The woman who answered sounded kind (if amused) and said she'd have a nurse call me right back. The nurse called quickly, and with equal parts compassion and humor told me that if he wasn't in any pain and the penny wasn't blocking any... action... then we'd just need to bulk up on fruits and fibers and wait for it to pass. Just how I'd hoped to spend my Saturday.

Penny for your thoughts?

Friday, March 10, 2006

Common scents

I have always had an outrageously sensitive sense of smell. I'm not sure why, but things that other people dismiss as aroma-free or scent-neutral have strong odors to my nose. And of all the senses, smell is the one that can most easily trigger memories for me. Seeing a place I've been before, hearing a song that reminds me of a time in my life - they certainly bring back reminiscent feelings. But the scent of a thing or a place or a person - a scent can transport me back in time in an instant. It's not just a memory; for that instant, it is a reality - one whiff, and I am momentarily sitting on my grandmother's couch, or walking to the pencil sharpener in my third-grade classroom, or standing on the stage of the high school auditorium, or kissing a cute young man in college.

My husband thinks I'm a little kooky, but he's gotten used to my overactive olfactory sensitivities and my proclivity to go through life sniffing things (though to be honest, the extremely overactive sense of smell I experienced in pregnancy was almost enough to send us both over the edge.) For the most part, though, he complies with my requests to smell things for me, and indulges my lengthy sniffs in the crook of his neck.

I have a theory that in a blind test in which Bud was presented to me at random times throughout the day I would be able to give an accurate report on what he'd been doing just by smelling his hair. In the morning, I'd know if he'd been sleeping in his own bed or ours, and if he'd been in ours I'd know if he'd been sleeping closer to his Dad or to me. Later in the day, I'd know if he'd been playing outdoors or in. I'd know if he'd been to school (and would be able to tell if he'd been at Kindergarten or if he's been visiting his old preschool, as they create entirely different hair smells.) If he'd been in Kindergarten, I'd know by the smell of his hair if he'd had a fairly independent day or if he'd been clinging a lot to Mrs. H. And on and on and on.

Today was Hibernation Day at Kindergarten: everyone wore their pajamas and got to bring a stuffed friend along for the day. Bud was absolutely delighted to wear his jammies to school and to bring in Cat in the Hat, and he was full of energy at the end of the school day. He was chattering non-stop as we unpacked his school bag, but stopped in mid-thought as he pulled out Cat in the Hat, then plunged his nose into Cat's belly.

"Mama!" he squealed with glee, "Cat in the Hat smells Kindergarten!"

I plunged my own nose in. "He sure does, Bud!" I agreed. "He smells EXACTLY Kindergarten!"

That's my boy!

I'm just not sure how to break it to my husband.

Thursday, March 09, 2006

Great days and transferable skills

The good news is that in our little autism community, even though our kids often have behavior squalls at the same time, they also frequently synchronize their great days. So it was yesterday for Henry, and Charlie, and Bud (and hopefully, even more friends who have just been too busy enjoying the good times to post about them.)

Yesterday's "yipee!" for me came in the form of a note in Bud's School-to-Home Notebook. Since Bud's very first IEP we have been trying to help him take the skills we know he has at home, and transfer them to the classroom. In preschool we carefully worded his IEP so that his goals reflected the transferability - Bud will identify colors in the classroom environment; Bud will identify shapes in the classroom environment. In Kindergarten, the skills we know he has and are trying to help him transfer are more language-based - things like rhyming and sounding out words. Last spring when Bud struggled through an assessment with a child psychologist, the doctor suggested that we look into intervention models that would help strengthen Bud's facility with joint attention - ones that would help him understand that the teachers, doctors, parents and peers in his life have a separate agenda from his and have expectations of him; ones that would help him want to try to respond to those external expectations appropriately. This doctor was the one who first mentioned RDI to me, and who really set us on the course we're currently following.

So imagine my delight when I opened Bud's notebook today and found this note from Mrs. H:

Bud has had the most amazing two days. His sense of humor is in rare form, his energy level is finding a home between "high octane espresso" and "herbal tea." I find I can "joke" him out of potential escalations, and by saying "Hey, Bud, I need a hug," he'll come over for the hug and the directions I am then giving him.

I have started repeating lessons 1:1 with him after I have done it with the whole group. Today's favorite was "A Hunting We Will Go" where he gets to reach into the huge bag and pull out assorted Beanie Babies and one large sand-filled frog. It's a rhyming game. Here's how it went:

Song intro (please note - they were taught in September "the fox goes in the box" to catch on to rhyme)

Mrs. H: We catch a dog and we put him in a ---?

Bud: Box? (smiles)

MH: We could! What rhymes with dog?

B: Log. (tentative smile)

MH: Yes! (Big smile - song again)... catch a pig, put him in ---?

B: Mud!

MH: Yes, what rhymes with pig?

B: Jig! (smiles and laughs)

Etc. - assorted animals are pulled out and EACH time B tells me the appropriate habitat for the animal. I agree with all of it and then ask for the rhyme - which he correctly gives me (and even plays with language!) Finally he pulls out the big, fat frog.

MH: Catch a frog, and put him in a ---?

B: (Pause. Pause. Pause. Pause. Looks at me, smiles and yells) BOG!

Habitat AND rhyme! Silly ol' Mrs. H - sometimes it takes you so long to get it! Happy Wednesday!

Happy Wednesday, indeed! Happy Wednesdays all around!

Tuesday, March 07, 2006

To sleep, perchance to dream

This morning Bud woke up early. Very early. 3:15 a.m. early. And when I say "woke up," I don't mean "woke up briefly" or "dozed off and on until dawn." I mean woke up bright and fresh, ready to start the day. I even gave him a second dose of melatonin, which had absolutely no effect.

It was odd and frustrating and more than a little tiring, but I didn't give it a great deal of thought until I read today's post at Autismland, in which Kristina wrote,

More than a few fellow traveler autism parents have been noting how the change in the seasons--the huge transition from cold winter to wet spring---has been affecting their children, sometimes to intense outbursts...Charlie has been having odd transition trouble, not so much between activities at school or home...but with transitioning from one state of consciousness to another: For the past few days, he has been agitated and tense a minute after waking.

and this comment from MothersVox at Autism's Edges:

My thought is that a good bit of this may be seasonal. . . esp. as it seems that a number of us are seeing regressions in our children this week. Personally I am very sensitive to changes in the amount of sunlight, and around this time of year I can be prone to changes in mood and difficulties modulating sensory information. People used to call this spring fever or March madness. I think it's a very real phenomenon. When the light changes suddenly -- such as a spate of really sunny late winter or early spring days after a number of grey days -- or perhaps just when the amount of daylight passes some critical juncture, I can become very very sensitive... When I think about how many hormones are thought to be activated by light levels, this does seem to make some sort of sense. Also, when I think about how many ASD kids have trouble falling asleep, I really wonder if being in artificially lighted environments keeps them awake. Maybe our kids are super-attuned to light levels.

It hadn't occurred to me that Bud's body might be dysregulated because of a sudden change in light levels, but it makes some sense. Historically he has struggled with sleep patterns during Daylight Savings time shifts and throughout the bright summer months.

As I think more about it I realize that, like MothersVox, perhaps I am being affected as well. I am typically a deep sleeper and rarely have dreams that I remember. But last night was unusual not just because I woke with vivid images of my dreams, but also because of their content. For the first time since we lost Bud's twin brother, I had a dream about the two of them. They looked like Bud at about age 3 and were absolutely identical. I was trying to get them ready for bed, but I was struggling to try to figure out how to get two giggling, squirming boys through the bedtime routine. And I was puzzled. I do this every night, my dream-self thought. Why can't I remember how I do this? I know I must have a routine. Why can't I remember what the routine is?

My dream-self was really confused when I brought them into their room (which, in the dream, was actually my brothers' room in our childhood home) and saw that there was only one bed. Do I really make them share a bed? Why do I make them do that? Why don't we have two beds for them?

Then my dream-self had a moment of panic: Oh no! What's going to happen when they climb into bed with us tonight? How will the four of us fit?

But they must do this every night. We must fit just fine.

I looked down at Bud and his brother - I wasn't sure which one was which - and saw that they had fallen asleep, two duplicate profiles side by side, sleeping peacefully.

And then I woke up, and for a moment I couldn't remember... there is something about that dream that isn't quite right... I'm not sure... but I know it's something important...

Oh, right. I remember now. Just one boy. Just one Bud.

It was inexplicably unsettling and soothing at the same time. I think about falling asleep tonight and both hope and fear that the twins will be there again. (Ay, there's the rub.)

So it makes me wonder. What is it that disrupts Bud's sleep so profoundly from time to time? What woke him in the middle of the night, not enough to upset him but enough to prevent him from falling back to sleep? Is it seasonal? Hormonal? Is it the same thing that gave him night terrors as a toddler? Is it a sensitivity to light? Or is it exposure to a light that's even more difficult to explain?

Sunday, March 05, 2006

Shiner

The goldfish gave Bud a black eye today.

Well, okay, not directly. But I hold them responsible anyway.

Bud didn't really want to go to the grocery store with me. I was going to the far-away grocery store that requires a 30-minute car trip, instead of the preferred nearby grocery store that offers free cookies and half the travel time. But, as I reminded Bud, the nearby grocery store only carries the SMALL Pepperidge Farm goldfish, but the far-away grocery store has the BIG giant goldfish that Bud has been wanting for weeks. So, with his mind focused on goldfish with all the taste in a bigger, flatter, smilier cracker, Bud climbed happily into the car to make the long journey with me.

He was patient through the drive, through aisle after aisle of the store, and through a long wait at the deli counter, but by the time we got to the cracker aisle his patience had worn thin. He spied the big goldfish on the bottom shelf, but somehow neglected to see the shopping cart that someone had parked directly in front of the big goldfish boxes. Bud dove for the crackers - and his eye flew straight into the rounded corner of the abandoned cart's handle. I heard the loud SMACK as Bud went down, then saw him stagger to his feet, his face red, his eyes streaming, his mouth yowling, and his arms tightly clutching a box of giant goldfish.

He was inconsolable as we sat together on the floor in the middle of the cracker aisle, his face buried against my chest. When I could finally pull his face far enough away from me to get a look at it I could see that it was starting to swell. I handed him some sausages to lay against his eye until we could make it to the frozen foods section and upgrade to a bag of peas. Bud whimpered through the checkout aisle and held the peas tightly to his face, offering them up for just a moment so the clerk could ring them through. He remained pea-faced through the long ride home, and then declared that he was feeling better and banished the peas to the freezer. I could see the swelling start to return, and detected a faint reddish purple that I'm guessing will be a much lovelier and deeper shade by morning.

Bud had only one request before bed. He wanted a snack: Goldfish. Big ones.

He never was one to hold a grudge.