Gobble Gobble

Happy thanksgiving to my friends in the blogosphere...

Vo-Brad-ulary

Here I translate Brad's top four cute-isms. One is a result of articulation challenges, one is him just being cute and the other two are a result of poor facial recognition.

"Ga-MEEN-as" - bananas

"Cozy" - Noun. The space between Mommy's back and the couch. E.g., "Let's play in the cozy!"

"Grandpa" - universal word for bald guy

"Robin" - universal word for brunette female with glasses

"I was normal, for what I am."

My latest entry in my One Person Book Club is Look Me in the Eye, by John Elder Robison. Robison happens to be the brother of Augusten Burrows, who authored Running With Scissors (upon which the movie of the same name is based). However, Robison is accomplished and interesting in his right. Also: he's a good netizen.

Look Me in the Eye is a great read from start to finish. Parts of it were informative, explaining how an Aspergian thinks. But the bulk of the subject matter is a compelling story having little to do with Aspergers itself, narrated with a strong Aspergian voice. So, more often than not, he shows the reader how he thinks, rather than tells us.

Robison was not diagnosed with Aspergers until he was in his 40s. He writes, of reading about Aspergers:

Just reading those pages was a tremendous relief. All my life, I had felt like I didn't fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.

This passage left a strong impression on me. My journey has caused me to think a lot about what the label means. I've blogged about what I think the label means in the objective sense, and others have chimed in about how they perceive the label - some positive, others negative. Often overlooked in the debate is what the label means for the individual with the condition. What I gather from the account of Robison and others is that with the label comes a sense of understanding and a sense of community and pride.

And so while others concern themselves with the negative stigma associated with the label, I'm struck by the importance of the label with respect to identity. Imagine if you were ethnically diverse or racially diverse (in a nonapparent way), and your parents never told you to spare you negative judgement by ignorant people? This is, in part, why I think it's harmful to dodge the label.

I thank Robison for his emotional honesty.

SPD: Taking it to the Next Level?

As I blogged, Sensory Processing Disorder is not in DSM-IV. The lobbying effort to add it to the next version of the diagnostic manual has gone to the next level. Yes, there's an online petition. I'm somewhat ambivalent about this. On one hand, I'd like to see the diagnosis legitimized. On the other, I'm not sure its addition should be so democratic. A compelling medical or scientific reason should drive its addition, not popular demand.

Born to hand jive, baby.

Occasionally I am asked: what is Floortime?

The best reference is Engaging Autism, by Stanley Greenspan and Serena Wieder, who pioneered the technique. The therapy is predicated on the theory that inside a person with autism is a social being, willing and able to engage. However, due to "biological challenges", engagement is elusive. Hence, the primary goal of Floortime is engagement.

We are fortunate in that three members of Brad's team are formally trained in Floortime. His speech language pathologist is taking a Floortime class currently, so Brad is among her first subjects. As I blogged, she's taping him for class. Brad's occupational therapist took Floortime classes taught by none other than Stanley Greenspan himself. And last is the specialty provider whose specialty is, yes, Floortime.

Here, I will share what I have learned.

It's pretty basic, really. To engage Brad, I get down on the floor and enter his play. Two techniques that are key to success:

1) Integrate with occupational therapy. Because Brad tends to persevate and zone out when he's inert, we start off play with some physical play. I recently retired our Thomas table so that our entire playroom is one big crash pad. I even bought an exercise mat. When we play, we often do so on uneven surfaces that give him procieptive input.

2) Hand jive, baby.

Every good Floortime therapist does hand jive. Well, they don't call it that, but I do. Hand jive refers to using your hand as a barrier to persevation, but also as an entry to your child's play. The first time I saw it, I didn't know what it was, and I thought it was obnoxious. Now, I know better.

For example, Brad has a book of numbers. It's a board book which tells a story that involves counting. Brad's going through a phase where this book is his favorite thing in the world and all he wants to play with. He stares at the numbers and recites them endlessly.

When Brad goes for the book, the Floortime therapist allows him to read it for a while and label the numbers, but after a minute or so, it's hand jive time: she puts her hand on the number he's looking at. This forces Brad to use spontaneous communication. And then she expands his "circle of communication." She'll say, "where's the 4?" "Are you hiding 4?" "That's so silly." Brad smiles. "Is it a big 4?" Bam. She's entered his play. She's engaged him.

My ultimate hope is that Brad gains warmth and humor during these formative years. It's been said that one can't experience empathy without experiencing these basic emotions. So that's our end game. While the warmth and humor (if any) ultimately comes from Brad and not from therapy, I believe that Floortime supports this goal.

An idea whose time has come...

Stop Jenny McCarthy, the website.

Update - November 3, 2008: It looks like the Stop Jenny site has been hacked.

Update #2 - November 4, 2008: Order has been restored.