Monday, April 25, 2005

One tooth at a time

For Bud, success at the dentist is measured in increments, and by that standard today's visit was an outstanding achievement! We first began his Adventures in Dentistry last year. I chose a pediatric dentist carefully, I prepared them with as much information about Bud as I could, and I spent a long time preparing him for what to expect. He spent the first visit in tearful hysterics, but through the mania the dentist got a brief look in his mouth (= success.) Immediately after we left the dentist, Bud was all smiles and was proud to be a dental patient. The stuffed Zoboomafoo waiting in the car also helped etch a positive memory next to the word "dentist" in his mind.

At his visit six months later, he had high anxiety but no tears. He sat on my lap in the dentist's chair and let the hygenist and the dentist count his teeth (= success.) Another triumph, and a lot more pride.

Today, a year older and a year braver, Bud climbed up into the dentist chair all by himself and even delighted in riding it waaaaay up in the air and back down again. No anxiety, no objections. He let the hygenist count his teeth AND - wait for it! - he let her polish one whole tooth with the noisy spinning brush! Major, major victory for our team!

With progress like this, someday we may even floss!

Monday, April 18, 2005

And sometimes he communicates just fine

Yesterday we were riding in the car listening to one of Bud's Hap Palmer CD's when he exclaimed excitedly, "Mama! I have a great idea!"

"What's your idea, Bud?" I asked.

He replied in a chipper little voice, "You just drive, and you don't sing!"

Everyone's a critic.

Thursday, April 14, 2005

Clear as Mud

In today's mail I got the notes from Bud's latest visit with the developmental pediatrician (who I like very much) at the Big Name Hospital we use (which I like very much). There was a lot of insight and some good, accurate assessment of Bud, but when I got to the "Updated Diagnosis" section it all seemed to fall apart. Here's a sample:

"The diagnosis which I feel best explains Bud's developmental and behavioral features is that of a language-based developmental disorder most consistent still, at this time, with pervasive developmental disorder not otherwise specified...I clearly do not feel that he has autism and would argue against a descriptor of mild autism for Bud at this time. As I explained to the family earlier, I feel, based on the language difficulties, that Bud either has a primary language disorder, such as oromotor speech dyspraxia with secondary social language difficulties, or the underlying pervasive developmental disorder overlying pervasive developmental disorder, which includes as a subtype for clinical purposes pervasive developmental disorder not otherwise specified...The major problem, I feel, is in how he is using language reciprocally and how sensory stimuli tend to confound and interfere with his proper use of language. I wonder if, in fact, he does have a more significant language disorder than he does a social language disorder."

But I guess it sounds a lot better than saying "Beats me."

Monday, April 11, 2005

Dog-gone it

Bud is terrified of dogs. As those of you who live with and love people on the spectrum may know, I am not talking about anxiety. I'm not even talking about fear. This is terror.

Here's the thing. We live in a quiet neighborhood in small, rural town where people keep pretty much to themselves. We nod to our neighbors as they drive by, but we don't really know them. Most people in our neighborhood have dogs, and though there is technically a leash law I'm not sure that any of them own leashes. The dogs, though for the most part gentle, roam freely throughout the neighborhood. None of us have fences, so there's nothing keeping the dogs in their yards or out of ours.

You see where this is going. This winter on a beautiful sunny day we bundled up to play in the snow. After a few minutes of fun, one of the neighborhood dogs wandered into our yard and Bud pretty much got hysterical. I've been able to get him outside to play once since then, only by swearing on my life that we would come inside the instant we caught sight of a dog. We lasted about 15 minutes before he heard a dog bark and insisted that we go inside.

Now that the days are getting longer and the air is getting warmer, I really want him to be able to go out and play in a dog-free yard. I want to write a letter to our neighbors to ask for their help, but I'm not sure how much to tell them. Do I tell them he's autistic? Is that an invasion of his privacy? Will they take it seriously if I don't include that fact? And what about the mystery neighbors who live down the long driveway, don't pay their community water bill, and whose dog is a scary part pit-bull? What kind of reaction will we get from them?

I feel like this is something I really need to do for Bud, but at the same time it makes me feel very vulnerable and somehow exposed.

Monday, April 04, 2005

This Child Brought to You By...

These days our house has been full of the lilting lyric of underwriting announcements from PBS Kids.

Bud's echolalia has advanced to the point where he now adopts the form and syntax of memorized speech, but pulls out salient nouns, verbs, proper names, etc. to make what he's saying fit the situation he's in. Some of these constructs are exceedingly complex, so "One day in Teletubbie land, all of the Teletubbies were very busy when suddenly a big raincloud appeared," becomes "One day in Bud's house, Mama and Bud were very busy when suddenly Daddy appeared" - this, instead of "Daddy's home."

Anyway, lately everything has been "brought to us by" or "made possible by" something. So I picked him up from preschool and he greeted me at the door with "School was made possible by a ready-to-learn grant from the U.S. Department of Education, the Corporation for Public Broadcasting, and by contributions from viewers like you. Thank you."

Another day last week, virtually everything - Zoboomafoo, lunch, bathtime, Black Car - was brought to us by "the makers of Danimals yogurt."

That night he climbed into bed with a heavy sigh and said, "Mama, I love the makers of Danimals yogurt."

Who says public television is commercial-free?

Sunday, April 03, 2005

Books Bought and Read

I'm about halfway through Nick Hornby's The Polysyllabic Spree, which is a compilation of columns he's written for The Believer. Each month, Hornby lists the books he bought and the books he read - sometimes, the lists are even similar.

I've been a Nick Hornby fan since High Fidelity was released. After How to be Good, I lost track of him a bit, but was delighted to stumble back across him recently. Interestingly enough, he also has an autistic son, which for some reason only makes me like him more. I know that's irrational; I'm sure there are complete idiots out there who have autistic children (though, to be honest, I haven't met one yet.) It may have something to do with the extraordinary work he's done by founding TreeHouse.

The Polysyllabic Spree has inspired me to start tracking the books I buy and read as well. Since I don't have the time, energy, or inclination to read as much as Hornby, this is likely to be a several-months-at-a-time endeavor. And in that spirit, here is the run-down of books bought and read, in order (to the best of my fuzzy recollection) for the past three months., January to March, 2005.

Books Bought:
Not Even Wrong: Adventures in Autism - Paul Collins
The Answer Is Yes: A Novel - Sara Lewis
Second Draft of My Life - Sara Lewis
Our Journey Through High Functioning Autism and Asperger Syndrome: A Roadmap - Linda Andron (ed.)
A Heartbreaking Work of Staggering Genius - Dave Eggers
Sixpence House: Lost in a Town of Books - Paul Collins
Songbook - Nick Hornby
The Polysyllabic Spree - Nick Hornby
Banvard's Folly: Thirteen People Who Didn't Change the World - Paul Collins

Books Read:
Not Even Wrong: Adventures in Autism - Paul Collins
The Answer is Yes - Sara Lewis
Sixpence House: Lost in a Town of Books - Paul Collins
A Heartbreaking Work of Staggering Genius - Dave Eggers
Second Draft of My Life - Sara Lewis
Pervasive Developmental Disorder: Diagnosis, Options and Answers - Mitzi Waltz
Aspergers Syndrome, The Universe, and Everything - Kenneth Hall
Your Inner Physician and You: CranioSacral Therapy and Somatoemotional Release - John Upledger
Banvard's Folly: Thirteen People Who Didn't Change the World - Paul Collins
Thinking in Pictures - Temple Grandin (unfinished)
The Polysyllabic Spree - Nick Hornby (unfinished)

Starting in January with Not Even Wrong is actually appropriate, because many of the books I've read since then can actually be traced back to Not Even Wrong. I've written about it in a previous post, but I just saw on amazon.com that it has been released in paperback with a different title, Not Even Wrong: A Father's Journey Into the Lost History of Autism. I'm not sure if this is some publishing practice that I'm not up on, but Collins' first book, Banvard's Folly, had a different subtitle in hardcover than it did in paperback.

Anyway, I loved Not Even Wrong so much that I immediately bought Sixpence House and soon after, Banvard's Folly. They are all very different from each other, but I would be hard-pressed to choose a favorite. Like Not Even Wrong, Sixpence House is a memoir of Collins and his family as they attempted to buy a house in Hay-on-Wye, a small Welsh town with 40 bookstores. The book introduces Collins' son Morgan before he is diagnosed with autism, though there are little glimpses that I recognized from Bud's early childhood - like taking him to a park with an acre of grass and watching him seek out the one strip of head-bashing asphalt on which to play. Sixpence House is delightful and engaging, and I was sorry when it was all over.

Banvard's Folly is an entirely different kind of great read. It is a historical journey through the lives of thirteen disparate people who have one thing in common: failure. They are people who, through circumstance, bad judgment, poor timing or ill repute sealed their fate as could-have-beens. Each story is compelling and fascinating, and though it is not the sort of book I would typically be drawn to, once I started reading I found it hard to put down.

A google search of Paul Collins led me to McSweeney's, which led me to Dave Eggers, and boy am I glad it did. I was completely captivated by Eggers' memoir of raising his young brother after both of their parents died of cancer within months of each other. I was equally captivated by Eggers himself. His book captures the simultaneous self-aggrandizing "I'm the King of the World" and self-loathing "I can do nothing right" assessments that (apparently) exist in us all, but that we each think are ours alone.

Interestingly, McSweeney's also led me to some old friends, including Nick Hornby and Ayelet Waldman (who was posting to a listserv at the same time as me for a while several years ago, and because of the personal nature of the listserv and some shared emotional trauma feels like an old friend. Long, long story that I will never go into, but that I'm sure she'd discuss at length should you ever have the opportunity.) Ayelet's husband, Michael Chabon, was also there at McSweeney's, and I was reminded that though I have given Kavalier and Clay as a gift several times, I've never gotten around to reading it myself. So, it's on the bedside table waiting... but more on that next time.

A second but no less significant thread that resulted from Not Even Wrong was a renewed interest in reading autism-related books (I tend to go in waves with these) - thus, Pervasive Developmental Disorders, Thinking in Pictures (which I keep going back to but never stick with) and Asperger's Syndrome, The Universe, and Everything. This last title was written by a young boy (ten or so, as I recall) with Aspergers, and is a terrific insight into the way he ticks. Though Bud doesn't have Aspergers I find that "aspies" are as close as relatives, so Kenneth Hall's world was strangely familiar. It is a great, quick read.

The other books - Upledger and Lewis - were completley unrelated to these other threads and were sort of "cleansing the palate" reads. That's not an insult. They were great cleanses.


Friday, April 01, 2005

Stumped

Bud's latest language challenge has me stumped. One of his new favorite activities is watching Teletubbies videos on our small portable DVD player. He especially likes watching it from angles so that the Tubbies look very tall or look overexposed. He also loves playing with the slim, credit-card sized remote control to watch the movie in fast forward or reverse, or to change the setting so that the narrator uses a British accent instead of an American one.

Here's the mystery. He calls the remote control a "miper." He does not call the regular tv remote a miper, so it is exclusively this particular device that holds that title ("Mama, I can't find my miper!")

There is an answer. It is logical. It is not even wrong. I just can't figure it out.

Stay tuned.