Friday, April 13, 2012

Reevaluation Results

This morning, my husband and I go for the results of our daughter's neuropsychological evaluation. I'm not much looking forward to it. I keep telling myself, we already have a diagnosis of autism, there shouldn't be any surprises. But that's usually when the Universe does something tricky and throws you for a loop. (Oh it's fun being me sometimes...)

So anyway, the idea is that we will be able to have this conversation with the doc uninterrupted; the appointment was made when Diana'd be in school and my husband took the day off. The doctor will discuss her findings with us, she'll give me back my file box (yes, a whole file box of paperwork - autism generates a ton of it), the end. I guess what has me so anxious about her findings is the recollection of overhearing some of the things that I could hear Diana saying/responding to the tests she was given. She was asked to identify photos of children and adults as "happy, sad, angry or fearful" and then identify tones of voice (children and adults) with the same four options. The test administrator nearly always gave the options in that order, and in those words. Diana most often responded - when I could hear her - with "fearful," parroting the last option. It was the end of the second day and she was tired and frustrated; just how useful can those test results be? I know she knows facial expressions. I know she can recognize tone of voice. But A) the administrator should have mixed up the options more, and B) "fearful" is a stupid word (particularly with a learning disabled child); "afraid" or "scared" are better choices. It won't make any difference with the results, but I do intend to bring that up with the doctor - she wasn't the test administrator, and I don't know if she was in another room observing or if that session was recorded, but she should know.

Because there was at least one test that I know Diana did poorly with, I suspect she didn't test well the whole two days. It's hard for strangers to get information out of her; that's been an issue all along. When she gets to know the people she works with, and likes them, she typically works very hard. Her team at school always tells me that she makes good progress, works hard, and is a joy to work with. I know the doctor will not have seen that from her.

And I guess that is what has me conflicted. Part of what we're attempting to do here is indicate that she's not capable of being independent when she's 18, and become her court-appointed guardians. We can't just show up at a courthouse on her 18th birthday and announce this without some proof on our side. What we're doing is laying groundwork for her becoming our ward. Unless she has some very significant growth and progress in the next three years, that's exactly what will need to happen. The worse she does on tests like these, the better our case for guardianship. But this is my child - I don't want her to test badly. I'm really not looking forward to this morning.

Several years ago, I had a meeting with Diana's social worker, apart from the typical IEP setting. At some point she asked me how I felt about all this -- "this" being the tests, the meetings, the special education process. I told her flat-out that it was depressing, it makes me angry and sad, and that I hated it. I love my daughter and will do anything for her, but I hate the process. She looked flat-out stunned. I don't know if it was my matter-of-fact tone of voice that made the statement so badly, or if I was the first person to ever answer her question that way. I don't know, and didn't ask. At the time, I was a little amused; still am, actually. (Shocking people has always been entertaining for me, particularly when I'm shocking them with truth.) It's been probably 8 years since then; I still feel the same way.

UPDATE, RESULTS: I really like this doctor, and my husband seemed to like her as well. She's candid without being harsh. Unfortunately, her news was not what you'd call uplifting. There were no surprises; we live with this child, we know, roughly, what she can/can't do. And the news was that she's functioning at levels between kindergarten and second grade, depending on the skill. We know the abilities are in there, somewhere, but the tests can't pull those things out of her head, she has to produce them herself. And she can't.

1 comment:

Sharon said...

I did not see this until this morning. For some reason, I was so tired yesterday that I went to sleep at 7:30. I hope it went better than you anticipated. Please call and let me know. Love you all!!