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.