Tuesday, April 15, 2008

Unofficially.

Last Friday, we had the final portion of KayTar's autism evaluation. No really, the LAST portion. For real this time. I secretly think they want to adopt her as their mascot and that is why we keep getting called back. Afterwards, I asked if there was anything they could tell me before the reports were finalized. I haven't asked this before. I'm content to let them do their job, draw their own conclusions without my questioning and interference, but since it was the last time I'd see them before her ARD, I thought I might as well see what I could find out.

They said, unofficially of course, that they are not pursuing an ASD diagnosis for KayTar. Although she clearly exhibits a number of autistic behaviors, they are secondary to the overall neurological picture and until the neurological problems are diagnosed, they are reluctant to give her an ASD label. I completely agree with this reasoning, however, an ASD diagnosis would have been helpful in facilitating appropriate services. Bummer.

The SLP said that although she has significant speech delays, they are not the sort that are easily captured on the results of the diagnostic tests. She said KayTar is consistently testing at or above age level, which is wonderful, except that everyone agrees that there are significant speech problems and she needs therapy. It is just incredibly difficult to show this in black and white on a standardized evaluation form. KayTar's language delays are largely in pragmatics. I think the SLP might even be pursuing a diagnosis of Semantic-Pragmatic Disorder which is related to hyperlexia, SURPRISE! So, she is attempting to work this angle and use it to get KayTar the services she NEEDS, but nothing is for sure because KayTar's problems exist in a gray area, as always. You just can't put her into a nice little diagnostic box and the system thrives on tidy little boxes.

The problem is, KayTar doesn't ONLY need speech therapy. She needs occupational (for her sensory and feeding problems) and physical (for her tone and gait issues). I'm worried that she isn't going to be getting what she needs. Because the evaluation team is so thorough and have identified what she needs, they are really trying to manipulate the system so that it can help her, regardless of her out of the box status. There is something called an OHI (other health impaired) they are pursuing to help her qualify for services and appropriate placement. They sent the form to her neurologist who put "developmentally delayed" and sent it back, because for fear of the dreaded threat of "pre-existing conditions" and ridiculous insurance situation everyone has been told not to write anything specific on her paperwork. So in this situation, it was a terrible catch-22 that would have left her without services OR insurance. Dude. But I took the form to the pediatrician last week and I think that the information she gave will be adequate for the OHI. I hope.

So the bottom line is the story of our lives really. No one knows what's going on with our little dear. The fact that she has no diagnosis isn't just an inconvenience, it might just keep her from getting services that everyone agrees that she needs. She's an anomaly. She's brilliant. She's delayed. She's above age level. She's below age level. She can read from my textbooks. She can't relate simple experiences to me. We just don't know. Almost two years from the start of this and endless rounds of testing later, and we just don't know. I'd like to say it doesn't matter, that after this summer's debacle of having our hopes raised (I can't even look at that post without my stomach turning inside out) and dashed we had given up on ever discovering what the larger picture is for our sweet girl, and maybe we have. But I still think of it. Dream of it. Imagine what it might be like to know, really know. But I no longer expect it. She is who she is and I couldn't be more pleased with that, but the questions without answers circle in my mind sometimes. Who will she be in a year? In five? In ten? Will she continue to thrive? Will school be too hard for her? Are there more surprised up ahead? We just don't know. We know her, who she is today, who she was yesterday, and really, that is enough for us...but sometimes, times like this, I just wish we knew a little extra.

Last night, Josh and I were lying in bed watching Mystery Diagnosis. The woman had been to doctor after doctor and been told everything was fine, that the debilitating pain and lethargy was psychological, and finally they discovered she had Hashimoto's Thyroiditis. I said, "I hope she wrote letters to all those doctors and told them what they dismissed so carelessly." And Josh said, sarcastically, "Oh, like you did to IdiotPediatrician?" and I said, "If we ever get a diagnosis, I will. We'll be on this show and I'll send him a letter saying 'Please watch Mystery Diagnosis on such and such date, you'll be the idiot doctor I talk about in the beginning. Enjoy.'"

One day, I really hope I get to send that letter.

28 comments:

Mad said...

You do realize that Hashimoto's Thyroiditis is another word for hypothyroidism? You know, the bane of my existence lo these last three years. The one that it took 2 1/2 years for anyone to figure out?

I so wish that Kay-Tar had the adequate label she needs to ensure proper care and proper coverage. Even with diagnosis, though, there is bitterness. Or maybe that's just me. I long to have your generousity of spirit, Kyla.

Hetha said...

I am continuously struck by the similarities between Ethan and Kaytar. They have the same therapies for almost identical reasons, speech being their only significant differences. He has the neurologic background, we've been through many of the same tests. Could you convince a doctor to give you a cmv diagnosis- just to have a label that would guarantee services?

Mad's right. As you know, we received yet another new diagnosis this week and though I should be celebrating what this means on paper, I am bitter and angry that my guy can't get cut a break.

How do you maintain so much grace?

Janet said...

Your resilience and optimism buoys me up when I come here. I just wanted you to know that.

I hope you get to write that letter.

Family Adventure said...

I hope you'll be able to write that letter, too, Kyla.

But in the meantime, I really hope a way will be found to work the system so that she gets the services she needs and deserves.

Heidi

cinnamon gurl said...

That really sucks that she can't just get the services she needs without a diagnosis. Shouldn't the people in charge just be able to say that she's too difficult to put in a tidy box but she still needs services?

nomotherearth said...

Ditto what Cinnamon Gurl said. It just doesn't make sense.

Mimi said...

Oh, I can hardly wait for you to write that letter, Kyla. It'll be a doozy.

And what the hell kind of topsy turvy world do we live in that KayTar's health team has to be vague and ambiguous on her records if she is to have any hope of getting treatment? Insane.

Anonymous said...

The system is just so messed up. Really messed up. I have told your story to sooooooo many people. Everyone agrees something needs to change.

Hang in there Kyla.

Amy Z.

motherbumper said...

I really hope you get to send that letter - I really do my friend.

flutter said...

You know, I marvel at your grace. And hers.

liv said...

oof. i know how this feels. getting services, needing a diagnosis, fearing the stigma of said diagnosis, the brilliance, the shortcomings. i think it's so hard because they're all so different. kids just don't fit into the slots neatly most times. (hugs)

Gretchen said...

Oh man, I hope you get to send that letter!

Basically, it seems, that no one has seen a child like KayTar? God bless her, she'll teach them!

Hang in there Kyla!

slouching mom said...

what flutter said.

you are so incredibly serene about the fact that she can't be categorized neatly.

that serenity is a sign of maturity most people lack, i think.

amanda said...

Regardless of what the final label/ diagnosis may be, Kay-Tar remains gorgeous...

alejna said...

Oh, the ongoing limbo. I hope you get to write that letter some day, too.

And KayTar really is a wonder. So are you.

crazymumma said...

I want her to have a label so she gets the treatment you ALL deserve. But/And part of me loves the idea that she is this incredible and unlabelled being who is so beautiful.

fucking easy for me to say huh?

Corinn said...

Heh! Sounds like the letter I'll be sending to my former mental health doctor, who said diagnosis doesn't matter, we can just treat the symptoms. Yeeeeeeeeah... good thing I only went to him for meds to function better, not meds to let me function at all.

Er, back to you... ^^ If PDD-NOS can be a valid diagnosis, why not something like "general developmental differences: not otherwise specified"? It sounds good as a "placeholder" for some, and for others, "the kid is one of a kind, literally" final DX. Life in general is too weird for people to think we can find boxes to fit everyone into!

Karianna said...

Grhgpht. (sounds better aloud than it looks written)

On one hand, I am impressed with how thorough they are being in not slapping on labels that might not fit. From a philosophical perspective, getting an accurate diagnosis is fantastic, and might end up leading to treatment of the cause rather than the symptoms.

And then on the other hand, I recognize the importance of having something that can pass muster for the red tape. Even without the actual "cause," the things she needs to succeed are fairly clear, so I understand the need to "work backwards" to justify what they already know she needs.

As always, fingers crossed.

jen said...

honey, you amaze me. the grace.

Lisa b said...

Dude I have SO Many of those letters to write
and then I think if they don't even care is it worth my effort?
I'm in this game right behind you cheering you all the way.
Even though we have a diagnosis it is the same struggle as the diagnosis isn't bad or specific enough.
Here is one mom's description of it which might hopefully make you laugh at all this not knowing.
http://getwhatyouget.blogspot.com/2006/10/questions-and-answers-about-sotos.html

Aliki2006 said...

I hope you write that letter, too.

I'm sorry the saga continues--but it would no matter what, really. It's hard to deal with the gray areas. Remember too that KayTar is still young, and with time, hopefully, the picture will even out and the areas become less gray.

Beck said...

I so hope that you can write that letter any day now.

Redneck Mommy said...

It would be much easier of KayTar to get services if you would move to Alberta.

Hint, hint.

Stay strong Momma. You are your daughter's best advocate.

painted maypole said...

i hope you get to send that letter, too.

and as frustrating as this is, it sounds like there are LOTS of people working hard to get Kay-Tar what she needs.

kittenpie said...

I hope you get to send it too, if only as a door to services and maybe the start of understanding a bit or peace of mind. My experience with my mother, though, was that after a few years, an eventual diagnosis didn't really change a lot, just my own outlook and acceptance.

Bon said...

i wish the answers were easier to find, but i am happy that at least everyone on your team seems to be working together towards trying to get Kay-Tar what she needs, whatever that may be.

and i grow more and more interested in this brilliant/delayed picture as i see more and more pieces of a similar if less dramatic puzzle unfolding at my house.

i hope you get on Mystery Diagnosis. i'd get cable for that!

Chaotic Joy said...

Just popping in for a Kaytar update. I am disappointed to find out you didn't et the label you wanted but so happy that those evaluators genuinely wanted to understand her condition and will help you fight to get her what she needs.

Don Mills Diva said...

I hope you do too Kyla - I wish I had some words of wisdom but I can only say it sounds like your daughter is truly something special and I really hope she finds some services that can enhance all her wonderful qualities and help bring the areas in which she's lagging up to speed...