Testing 1…2..3, testing …
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.
Regardless of pre-prep, nothing prepares you for for something like this.
As always, sorry, man.
My favorite part is where it notes that Pearlsky does not say please or thank you.
Because, clearly, your problem is that your daughter has poor manners and isn’t polite enough.
Her strongest suit is socialisation.
(Especially coping skills).
(Not that it reflects).
And you are a great fighter for the fairness and dignity of assessment.
That remark to the vet is quite right.
This is a good/challenging post. I’ve never cared about this stuff. It never bothered me. Tests of “cognition” are good to get services. The worse off the kid, the more the services (supposedly)…sort of an inverse benefit. Mind you, I have had the good fortune of working with psychometrists who thought the whole testing thing was bull from the start, when it came to kids like Sophie. I have never thought about **“Are you going to treat any differently depending on the outcome of the test?”** That’s interesting, and likely does happen with certain people, either to the child’s benefit or detriment; but our kids are judged all the time and isn’t that always what we end up doing anyway, fighting to prove to people (school, doctor, etc) that our kids need/deserve stimulation of all sorts in the best possible settings? Finally, in the report itself, I was disturbed by the emphasis on the ongoing push to “get” Pearlsky to communicate…or find how she can…this has been going on for years and years. Understandably, of course! But it’s so tricky…is the push to get any child like Pearlsky to communicate (or to access their ability to do so) a huge frustration for that child because they are obviously “failing” at it? Or is it a relief for said child that people keep on trying because they so want to communicate? That one bugs me….that’s a tough one. I suspect that **how** people attempt to help a child communicate (help, as opposed to make) is the key to making the child feel good about him/herself.
I hate all test results. Right or wrong, benefit or no benefit, I just hate seeing things I already know in black and white on paper. Something too real about it. I much prefer the head-up-my-ass method of thinking about my son’s problems. It doesn’t get me far, but at least it’s more comfortable than the testing.
There is something just so wrong and undignified about any human being summed up in 20 minutes and 6 pages. Snap! Just like that. There’s something about seeing a situation you know intimately well described in third person and in print. It’s so invasive and harsh and I will never get used to it.
I always appreciate the commentary more than the numbers. Though I am always sensitive to the remark “mother says…” as if my telling of something that happens at home and not observed by the clinician is somehow suspect and wishful thinking. And I always feel like ‘who is she/he to report about my kid and in the tone of the POTUS?’ and have to remind myself that the report is not for me, it’s for a skeptical, miserly entity who needs to read our situation in the harshest light so we can get necessary services. I never look at the numbers anymore because they are meaningless to me.
You’re not a freaking idiot and it’s really okay and understandable to be upset about all this.
All valid comments but selecting Gimky’s to praise for giving clear perspective. Having been on the other side and writing in the “tone of the POTUS” – we are no more all the same than all of you are – many understanding the “bull” Claire mentions.
Very delayed comment to this post but I am enjoying reading through all of your backfires and stumbled across this one and could not resist commenting. I am a clinical psychologist who used to work in the child and family setting doing cognitive testing on more or less a weekly basis. I can see why your psychologist was tempted to use the Bayley; you were correct in guessing that the tools we use are just not appropriate for every person and to assess a 17 year old who is non-verbal is very difficult with standardised measures (unfortunately I would think that your official guardianship process requires standardised forms) and she clearly chose the best that she had. However, the Bayley was not appropriate in yours, and similar, cases. For example, how did she know if Pearlsky was ‘interested’ in the book after meeting her for only 42 minutes? As she clearly acknowledges later in the report, only people who know Pearlsky well are likely to be aware of subtleties in communication and mood etc. I would have has difficulty assigning a score on that item and would have assessed her differently but that is unimportant know.
Please do not take the numbers at the end seriously. You cannot extrapolate the Bayley scores to a 17year old in this way. Two month old skills in the realm of skills acquired by an infant can be applied also to preschoolers but in no way to an adolescent. Forget them. You know how much of Pearlsky is inside her; you get flashes of a wicked sense of humour and if she is anything like her father, she is a wonderful person. Unfortunately she is limited by her physical constraints in sharing herself with the world. We simply can’t measure the Pearlsky inside with an assessment form.
Initially I was tempted to write critically about the conclusions and recommendations too. They are generic and not that helpful to you on a day to day basis. “work on communication and language skills” Um, ok. How? which ones? who should do this work? But then I thought further and perhaps this report will be exactly (and I am going through your blog from the end, so I have no idea what happens with the guardianship situation) what you need to enable on-going care for Pearlsky and granting of the guardianship, which I assume is the purpose of writing the report. Fingers crossed!
Finally (and I am sorry for the comment diarrhoea I seem to be suffering from), wow! I am blown away by the collective stupidity you seem to encounter in the health and education system and I admire your tenacity, patience, sense of humour, and obvious devotion to your children. I most likely would have imploded by now! Sir, I doff my cap to you.