Saturday, March 27, 2010

Kate Update

Last month Kris and I took Kate to the Tridas Center. Earlier this month we went back and received the results of the initial evalutation.

Let's just say we paid quite a sum of money to hear what we told them. I'll admit to being slightly more optimistic about it, but not by much. I did hear him say, multiple times, that Kris and I need a vacation once in awhile. Of course we both know this...but it's nice to hear it from a professional. The rest though...not so much.

She's not autistic. Awesome.

She doesn't have Pervasive Developmental Disorder. Awesome.

Both great things to hear.

Almost forgot, we did get a lesson in how insurance would treat Kate...which was interesting to say the least. Basically, there are no actuarials (?) for children as far as speaking goes. For example, someone who suffers a stroke and who spoke prior to the stroke, can be reasonably guaranteed to re-attain speech, to some degree or another. Speech therapy would be covered by insurance.

With children who have never spoken, there really is no timeline as to whether they will speak. Insurance won't necessarily cover speech therapy as there could be no end in sight.

Neither of us had considered that specifically before...but we have had our battles with the various insurance companies throughout the years.

Basically we were told that some of her problems are behavioral.


Since she almost died, twice, she's been pretty much spoiled. Who wouldn't spoil their child?

That same week, we saw the public school psychologist. She threw the phrase, "Intellectually Disabled." Hmmm...Kate may be a lot of things, but she is not dumb. We know that. We can see that. To be fair, it was under the guise of getting her more help...but still, we don't want that kind of label being attached to our daughter if it isn't true. Reminded of us Schuyler's Monster (h/t @oraclenude)

That was a small digression.

So we got speech and behavorial therapy out of it. Good enough. At least we have a path to follow. That also gave Kris a lot of work to do.

Fortunately, there is a very good one (speech therapist), nationally renowned, just up the street from us. So we make an appointment and she evaluates Kate.

"Kate is smart. In fact, I think she can read." - or something along those lines. She even mentions college. WTF? No one has ever mentioned college before. Awesome! Needless to say, we like this speech therapist.

She also suggested getting one of those Stephen Hawking talking boxes (only for children, naturally). Something along the lines of this thing. Sure enough, Kris sets it up with 4 boxes, "All Done" (her favorite), "Kate", "Yes", and "No". Kate doesn't seem to have a problem using it...correctly. She has a problem using it, but that's going to fall into the behavioral therapist's arena. Wow. So very cool.

So Kris is going to hammer the insurance company for as much as we can get out of them and I'm going harder? Sell more t-shirts? :) Whatever it takes.

The great thing is that we have a path again. No diagnosis, but a path.

I don't think we'll ever have a diagnosis.

My theory is that something happened in-utero. Perhaps Kate should have been a miscarriage...but she doesn't seem to care much for Grim. She fought through that only to be met by "The Man in White" only to dismiss him with extreme prejudice as well.

All I know is Kate is one bad ass little girl.


Kris said...

BUY A SHIRT FOR KATE! I could not not have been more succinct/precise than the words written here! Just buy a shirt for Kate...HELP HER FIND HER VOICE PEOPLE!

Noons said...

Sam didn't speak until he went to school. The quacks gave us all sorts of explanations. In the end we just hugged him a lot, hoped for the best and it happened. "Spoil" Kate rotten folks, she's a unique battler. Kids like her deserve all the hugs in the world!

oraclenerd said...

Agreed...and thank you for sharing your story of Sam with us. It is always great to hear the positive.

The Mop said...

I don't know my but from my head, as far as kids go.

But I'd suggest that,
The thing you need to keep an eye out for and fight 'tooth and nail' is the Viscous cycle of Institutionalization. As a parent, that is the real Boogyman. It doesn't mean there isn't some available help, that one could take.

But be careful, There is a slippery slope out there, Unnecessary, and is a 'people eater'

Keep the rubber side down.

Joel Garry said...

Regarding insurance, found a Missouri doc that might give you some ideas what to look for (or bug your representatives about) in your state. Or the 17 or 21 other states it refers to, whichever they may be.

I'll spare you my insurance rant, except to note my older boy, who is perfectly healthy, was turned down because he had gurd as a newborn. And I was turned down because of pre-existing conditions - which were either not found (and should have been) by the company that was turning me down when I was previously covered by them, or found when I was covered by them. So that's the main reason I'm not an independent contractor any more.

Thanks especially for the Schuyler link.

oraclenerd said...


Thanks for that document.

Kris has actually seen that exact document(she's an awesome researcher/advocate for Kate).