Really? A Reliable Cognitive Test for People with Down syndrome?
posted Monday August 30th, 2010
That’s what they are talking about at the University of Arizona in Tucson — and they are looking for volunteers 7 and older to test their tests.
I’m not typically one to offer my kids up as guinea pigs, but I’ve already emailed the researchers. Given that Sophie’s IQ has been estimated to be in the 80s — and the 50s — I figure I can handle whatever they say.
And Sophie loves to take tests on the computer. In fact, last week I pushed at her “team meeting” to switch from handwritten to typed spelling tests, and she got eight right (I believe out of 10) on Friday’s spelling test. A small but meaningful victory.
Maybe U of A can finally answer my oft-asked (and yes, I know, in many regards moot) question of whether Sophie is mentally retarded or not.
I am a retired School Psychologist. I have given literally hundreds of intelligence tests. The results of these tests are only as reliable as as the ability of the child to cooperate and the test to measure this particular child. Where you’ve gotten such different numbers, I’d say your daughter has to be very comfortable with the examiner and the examiner has to be comfortable with not necessarily doing a standard administration to get a reliable (repeatable) result. When I’ve tested children with Down Syndrome, I’ve been more interested in finding out what the child can do, than getting the perfect, “reliable” score. I don’t know what UofA is doing so I can’t comment on it.
Your child has Down Syndrome. That is enough to qualify for most services so you don’t need the MR label. MR is just a label. It does not describe a child or her abilities or potential. Some MRs have very even profiles of strengths and weakness. Some have very strong strengths and dramatic weakness. Look at your child. What can she do? What does she like to do? Polish up those strengths, emphasize them. Too often we get bogged down with what a child can’t do. Be creative about the weakness and learning around them.
Having said all that: sure, see what the UofA has to offer. Learning more about your child always helps. Just don’t expect a definitive answer. You know your child better than any of the “experts”. Go with your gut. I never went wrong trusting a parent’s gut. Best wishes for a wonderful future for your precious daughter.
Elizabeth: Thank you for your sweet and wise words! As it turns out, in the state of Arizona, to receive many services you do, indeed, need to qualify as MR — even if you have Down syndrome. Like I said, we have scores at both ends of the scale, so I’m “over” the whole concern…. But of course tempted a bit by UofA’s offer. Which, as it turns out, was not much of an offer. They are done with the cognitive studies and instead want to do a sleep study that sounded pretty uncomfortable/involved. So, onto the next thing…. And there are plenty!
Oh, darn. I just read the abstract on the journal article. It sounded very interesting actually because they aren’t doing just cognitive testing as in IQ, but actually looking at functioning of various areas of the brain. My concern would be, that it is normed on a very small sample. If you live in Arizona, you might see if your school district or the University can have the test available and someone who can administer it. Do you have a parent advocacy group that could help? Oddly enough I agree with Arizona’s requirement of MR, but don’t agree that a child that is functioning above that doesn’t need services. (I was licensed in Arizona, but never actually worked there because I knew the schools in the Phoenix area would drive me nuts.) Sounds like you’ve already gotten good at advocacy–Yea!!! The spelling interests me; I have found that for some reason spelling and handwriting can be a problem.. Computer keyboarding apparently uses a different part of the brain.
This is the first time I’d been to your site. You’re bookmarked now.
My Dad loves to tell that story of being at a round table discussion with, who in-the-day was THE expert in MR and kids and testing (he was a Psychology PhD student at the time) and the expert says something like this:
“Look over all the scores, decipher all the tests, evaluate the behavior of the child then write down the number that is going to get them in the best classroom for them”. That would have been in the 50′s.
In 5th grade I was a part of some kind of research study. All I know was it got me out of class and I got to go to the University and play with blocks and shapes and other stuff on a camera. To this day I have no idea what that was for.
PS. I would say that pretty much echoes what Dr. Young says up there too.
All kids have strengths and weaknesses and should get the education that suits their needs best. period. phooey on testing. Sophie is bright “high functioning” as they say (I hate that phrase) if she can do the writing I saw in your other post.