Thursday, November 18, 2010

katezilla: Rock Star

Of course I think my daughter is a rock star. Don't you?



It's been a little while since I have written about Kate, so here goes.

One of the awesome things about OOW this year...just about everybody I met asked about Kate. How cool is that? You guys are some pretty awesome people.

Kate has been doing well...nothing major to report over the last couple of months, until today.

Today was our follow-up visit with Dr. Sutton of Butterfly Effects. Back in February, we had a rather...poor performance from another doctor. He took our money and didn't really provide us with anything; no direction, no "I don't know", no nothing really. "I don't know" is just fine with us. If there is anything we've learned with Kate...she appears to be quite unique...so "I don't know" is perfectly acceptable. Funny how that ties in with IT isn't it? (no, I'm too lazy to explain that one)

Back to Dr. Sutton and today's visit.

We were aware that Dr. Sutton had already spoken to Kate's teacher and her Speech Therapist, way more than the previous doctor. Good sign. We met her at her office this morning at spent almost 2 hours there. She allowed us to vent (boy, you don't want to get either of us talking about Kate and her history and our plans...we'll go on forever). She took notes. She asked questions that she missed the first time.

The best part (weird, I know), Kate actually got a diagnosis. PDD-NOS. Pervasive Developmental Disorder - Not Otherwise Specified. In essence, Autism.

(Small dig: The first doctor said she didn't have PDD...thanks buddy.)

So what does this mean?

Means lots of goodness.

We now have a diagnosis. Yes, it might seem weird to be happy about something like this...but we've been searching for the longest time. It's...just a relief.

Mentally. Something to hang our hat on. Something to work towards getting her as functional as possible. Hope.

Financially. With no diagnosis, insurance doesn't cover many of her services. By many I mean almost all of them. PT, OT, Speech, her Home Health Aid (new acquisition). That's almost all out of pocket. Not sure why we pay for health insurance...it hasn't done us much good (well...just in regards to Kate).

Kate. Kate will now qualify for more. More services. Better services. More services too. She'll have access to a host of organizations now that will be able to help her (and us).

So we're excited! katezilla, Rock Star!

4 comments:

Bob Rhubart said...

That's good news, dude! The enemy now has a name. Time to kick some ass.

oraclenerd said...

@bob

never thought of it that way...i like it!

Anonymous said...

One of my cousin has autism. I see my uncle and aunt as some kind of hero for working so long to give him a life. Now, my cousin, can live an almost normal life.

It was a long and hard road, but I'm sure you guys will make it !

Kate is so lucky to have parents like you guys. You guys are some kind of modern hero !

Joel Garry said...

Kate-Zilla! Kate-Zilla! Kate-Zilla!

(wild screaming crowd sounds)

DSM-IV sez:

299.80 Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism)

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism --- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.


Sooooo... the definition is a catch-all. Let's just be happy the insurance companies have something to check in the form, and pray the soft science works (it can, I've seen it with some of those other specific disorders mentioned). We're all rooting for ya.

There's some interesting research going on these days.