Friday, August 04, 2006

The more things change

I've been scrambling to find a new autism specialist because the developmental pediatrician who's been working with Bud for the past four years is moving out of state. I was nervous about it because we live in a small, rural town and I'd heard that this pediatrician was the only autism specialist in the local area. Luckily, though, my investigations turned up what appears to be a fantastic child development clinic on the other side of the state that takes a team approach to assessment. The team is led by a developmental pediatrician and includes an OT, PT, and SLP, in addition to other specialists. Their assessment includes time in the clinic, a home observation, and a school observation, and seems like a perfect way to get a "where are we now" snapshot. Their wait list is long, but the woman I spoke with said she would pencil us in for early spring as long as we returned their intake paperwork as soon as we got it. It was an easy promise to make before I saw their daunting paperwork, full of questions that challenged my fuzzy memory - when did he first sit independently? drink from a cup? say a word?

So today I trudged up to the attic to pull out copies of the paperwork I completed when Bud was 2 years old and we were just beginning with Early Intervention. As I sorted through five-year-old paperwork I found the notes from his first assessment with the EI team. I remember the meeting well. I remember being delighted to open the door to find that the team was a group of warm, friendly, engaging women: Bud's target demographic. I remember sitting in a line-up on the couch - my dad, my mom, my husband, me - as we watched the already charming but still nonverbal Bud flirt with the team and revel in their attention and affection. I remember the four of us tag-teaming our answers to their questions:

"How would you describe his strengths?"
"He's very affectionate" - "Loving" - "He's flexible" - "Adaptable" - "He adjusts well to new people and places" - "He's very social" - "He plays well" - "He sleeps well" - "And eats well" - "He's so much fun" - "He's happy."

"What concerns do you have?"
"He's not talking" - "He doesn't react to pain" - "It doesn't seem to register" - "Not even when he bangs his head really hard" - "He doesn't point" - "He doesn't follow a point" - "It's hard to direct his attention to something" - "He seems to get overstimulated easily" - "He runs laps around the house when he's excited."

"And what would you most like to change about Bud?"
Uh -

The four of us sat upright, barely breathing, shooting glances at each other from the corners of our eyes. Of course, I thought, that's the point of Early Intervention, isn't it? We're supposed to want to change something. Of course that's it. I should have thought about this. I should have been prepared for this. How can we possibly qualify for Early Intervention if there's nothing we want to change?

The silence was going on too long; I could tell by the way the team members were looking at each other.

"Well, you know," I said. "It would be good if he could talk. I mean, I hate to think about him being frustrated that we don't understand him."

"Okay, good. So he seems frustrated?"

"Well... no."

"It would be good if he followed a point," offered my mom.

"And the pain thing," I said. "He could really hurt himself and we wouldn't know it."

We were crashing and burning.

It was Bud's dad who jumped in to clarify for the team. "See, the thing is," he said, "We just think Bud is perfect. You know, even if he's behind, he's perfect. He's the perfect Bud. And that's all we really want him to be."

They smiled and nodded. We exhaled. Bud qualified for Early Intervention.

So now, five years later, as I'm filling out the lengthy form for this new assessment I am mentally preparing the answers to the questions I assume this new team will ask as well. It's interesting to note how much has changed.

Some of the answers to the first two questions, his strengths and challenges, have swapped places; others have stayed the same. Bud still plays well, but now he has difficulty sleeping; his anxiety is high in social situations and he'd usually prefer to stay home than go to a public place; his language is still not typical, but he is able to communicate well; he has appropriate responses to pain; he points and follows a point and is increasingly good at maintaining joint attention; he's often fearful of new people and places; he still runs laps when he's overstimulated; he's still fun; he's still happy.

And that third question? The one about what we'd change? I don't have an updated answer to that one. Bud is still perfect.

Luckily, some things never change.


Tara said...

I am so glad you found someone for Bud to see. I am getting on a year long waiting list for Littleman- with a developemental/behavioral pediatrician. I will no doubt be inundated with paperwork as well.
The fact that your folks will be able to do a home and school observation is outstanding!! Littleman reacts so differently across a myriad of environments, sometimes the clinical view is only half the story.

Lisa/Jedi said...

That is a prefectly gorgeous story :) I resonate deeply to the fuzzy memory. Last fall when B had his trienniel review for the school district's special ed. services they started asking me questions about my pregnancy... don't they have the records from the last time they asked?!?

So glad you've found a new team for Bud!

Daisy said...

It's a tough switch, isn't it -- having to trust a new team of specialists. I identify with your acceptance of Bud as he is, even while wanting more for his future.

Kristina Chew said...

I've gotten so used to filling out those forms---can never forget the date of Charlie's diagnosis----when I look back at the forms I filled out for Charlie seven years ago, I realize that I was in denial about a lot. I tended to hedge about what Charlie could or could not do.

Bud has changed much since I've been reading him for the past year---still the same, and even better, I would say. Still and always perfect!

kyra said...

so dear! and so great that you've found someone good to see. and yes, bud IS perfect! perfectly charming in life (i'm sure) and on the page (i know!)


Jennifer said...

I just wanted to add a little comment about how much I enjoy your writing - both your style and your content! I think you should consider writing a book.

Mary P Jones (MPJ) said...

Beautiful as always. :)

As for those forms, boy do I wish there were a way to fill out just one and be done with it forever -- put it all in a database somewhere -- a database other than my brain!