ravan

Right now we're confused and a little worried.

So, a couple weeks ago Laila had a suite of neuropsychological tests done. sashagee told me that at the time, the tester said that Laila's performance indicated symptoms of ADHD, but since this misfold in her brain that was causing her seizures was affecting her behavior, she didn't want to formally diagnose her with anything. She also said that based on the same criteria she would diagnose Laila with a mild intellectual disability, but for the same reason she didn't want to formally diagnose her since Laila might be getting brain surgery with the hope of stopping her seizures--I say might because they have to do an sEEG to see if surgery is even an option, since if the seizures are coming from a critical brain area then excising it would be an awful idea.

Well, we told aaron.hosek about this. aaron.hosek is a school psychologist and most of his work involves testing kids for ADHD, autism, learning disabilities, etc., and he seemed pretty dismissive of neuropsychologists. He was like, yeah, they give them a test on one day and think they've seen it all. He said not to worry too much about it. And Laila's pediatrician seemed to back that up, saying that while Laila was definitely behind, she was only months behind, not a full year, and her rapid progress once she entered school was a very good sign that with therapy she could catch up.

But the reason I'm writing this post is that we just got a copy of the neuropsych's report and it rates Laila "exceptionally low" in many areas, and the highest she got on any area was "low average" (this was on life skills, like using the bathroom, cleaning up after herself, dressing herself, etc). The recommendation was to put her in special education and have an individualized curriculum with one-on-one instruction where possible.

I want to think the pediatrician is right, but of course the pediatrician didn't do any tests. But this is literally aaron.hosek's job that he does all day and he didn't seem to think there were major concerns, but he also hasn't actually tested Laila. We do have her in speech and occupational therapy for increasing her vocabulary and learning to better control her emotions and focus on tasks (we should have started it a year ago when we first were worried about her speech--the state agencies who did her testing did not do a great job if this is the outcome, since they let her out of services after only a few months), and they want to implement some of that in school for her too.

A lot of this is contingent on the results of her brain surgery (if eligible) and later possibly starting ADHD medication, since she has a very short attention span that's really hindering her learning and memory. On the other hand, since starting school her language has gotten much better--she's consistently using I and you correctly, answering questions with "yes" or "no" instead of just repeating the last choice you gave her back at her, narrating her actions to observers, and sometimes asking questions. But is this all just delusion on my part? I don't know--I guess it depends on if she keeps advancing quickly or not. We're going to have a consultation on an sEEG this week and we'll have to see what they say there.