There is so much to say on this topic, but I won’t say it all now.
I fought, with websites and a blog, visits to the State House, conversations with the U.S. Congress, to get Pearlsky out of the No Child Left Behind (NCLB) testing (and we won). Why? Even the “special needs” version REQUIRED asking Pearlsky multiple questions, over a period of 45 days, and more. But that’s another post.
You know the angst you suffer before some big tests on the kid? You have an MRI of his/her brain next week, and all you can do is freak out. Or the results of a spinal tap. Or whatever. I have a problem with most tests. As I used to say to the vet, “Are you going to treat any differently depending on the outcome of the test?” If the answer is “no,” then you have some thinking to do. With the vet, it was easy. With the doctors, not as easy, but why not?
Of course if the test is the result of an event, you probably need to do it. What I came to realize, to hang on to, is that whoever (or whatever) Pearlsky is TODAY, she will be tomorrow, after the test. I may know a bit more, but she has not changed. Why fear a test that WILL NOT change anything? Or, maybe give more information to improve care? Why do we freak out over tests?
But that’s not why I am writing this post, that’s for another day. It mixes in with the “medicine is an art not a science” stuff as well.
OK, why am I writing today?
I just looked at yesterday’s mail. There is the usual over-stuffed envelope from the hospital. It looks like the dozens, literally, in a pile in the corner of Pearlsky’s room, unopened. After every appointment I get a report. I was at the appointment, I know what happened, I don’t want to revisit it, leave me alone.
But what came yesterday? I was not expecting one. So, like the freaking idiot I am, I opened it. Fuck Damn Darn.
It is from the Psychology appointment for guardianship. She met with us for 42 minutes, remember? And now she sends a six page report. And it is fairly devastating. Yes, it is just a report. Yes, Pearlsky is still Pearlsky. Yes, she interacted with Pearlsky for all of 20 minutes. Yes, like the NCLB testing, none of it is for this population. But fuck damn darn.
Talk about useless, depressing, baseless, and more. Is it correct? Potentially, but none of the tests were designed for this population. But is it correct? It can be totally off, or dead on, no way of telling.
There are multiple sections to the report, Referral, Tests Administered (Bayley Scales of Infant and Toddler Development (of which she is neither), Vineland-II), Background Information, Behavioral Observations, Test Results (Cognitive Functioning, Adaptive Functioning), Summary, Recommendations, and the Appendix of Test Scores.
So how did Pearlsky do?
APPENDIX OF TEST SCORES:
Bayley Scales of Infant and Toddler Development, Third Edition
Cognitive scale = 2 to 4 months level
Vineland Adaptive Behavior Scales, Second Edition
(mean = 100, standard deviation = 15)
Communication = 28, <1st percentile
Receptive = 0:10 age equivalent (years:months)
Expressive = <0:1 month
Written = raw score zero
Daily Living Skills = 25, <1st percentile
Personal = 0:8 months
Domestic = raw score zero
Community = raw score zero
Socialization = 34, 1st percentile
Interpersonal Relationships = 0:1
Play and Leisure Time = 0:4
Coping Skills = 0:7
Motor Skills (Estimated) = 25, <1st percentile
Gross Motor Skills (Est) = 0:1
Fine Motor Skills (Est) = raw score zero (0:1)
Adaptive Behavior Composite = 25, <1st percentile
So there you have it. My Pearlsky. From the point of view of a psychologist who interacted with her for twenty minutes. Again, she may be dead on, she may be way off. Pearlsky is still Pearlsky. Fuck Damn Fuck.
If you are really, really, really interested, here is the report (a quick scan with the great FreeOCR).
NOTE: Any comment about me or Pearlsky on this post will be removed.