Down Syndrome Awareness — More on IQ Testing

Yes, I said to refuse IQ Testing for your child with Down syndrome!  If anyone asks, JUST SAY NO!  I didn’t!  I stupidly thought that a non-verbal IQ test might be just the thing to show the world (read: myself) just how smart My Boys really are… In hindsight, I don’t remember why I brought the subject up.  The school didn’t ask for IQ testing.  I did… sorta!  As a matter of fact, our school district didn’t ask for any testing at all.  Nothing… even as My Boys transitioned from CPSE to CSE with testing and evaluations that were 2 years old.  I thought that was strange and inaccurate so I asked why they weren’t doing “a full battery of tests” as I’d heard was the norm.  When they asked me what I meant by that I threw in cognitive testing along with PT and OT evaluations as well as a speech eval that allowed the diagnosis of Apraxia (and pretty much sealed the delivery of PROMPT services for My Boys)!

Yes, I’d consented. But, consent is a funny thing.  Recognizing that My Boys had Apraxia, it was key, for me, that cognitive testing be delivered using a non-verbal vehicle.  As such, I specifically requested that a non-verbal IQ test be used… recommending several choices including the WISC (Wechsler Intelligence Scale for Children), Leiter and TONI (Test Of Non-verbal Intelligence).  The parameters of each (including appropriate age range), the testers felt, were not quite right for use with My Boys.  So they opted for a standard Intelligence Test — The Stanford Binet — which is heavily reliant on receptive AND expressive language and is absolutely NOT APPROPRIATE for My Boys who have Apraxia!!!!!  I allowed myself to be convinced by the testers that the verbal versus non-verbal scoring of the subtests would accurately account for and depict the impact that My Boys’ language delay had on their scores. While these subtest scores certainly told a story a tad closer to the truth, they still did not approach accuracy for My Boys.  The rest, as I posted yesterday, is history… and will likely haunt us for the rest of our lives — as bad history often does — or at least for the rest of The Boys’ school career!

To counter the negative impact the scores had/may have on-going on the educational decision-making process for My Boys as much as possible, I indicated, in writing, that I disagreed and disputed the scores and requested NOT to have them reported in their IEPs with other evaluation results. Furthermore, I insisted that if and when the test scores were provided to any one or reported anywhere, the final scores must be broken down by verbal versus non-verbal results for each subtest.  Please note: Most testers will roll the results up for reporting which provide far less meaningful categories for all children but especially for children with special needs.  I based my request on the notion that the purpose of test scores was to provide an accurate and informative profile for those reading my child’s IEP.  To this end, the rolled up scores provided a misleading picture while the broken down subtest scores told a more accurate story. My school district agreed [but it was up to me to get the testers to provide the scores in the broken down format I desired].

As an alternative, if you’re so curious you just can’t help yourself, it’s also an option to pay out of pocket for IQ testing and ask the tester to use the specific test vehicle(s) you choose.  This way, you get to see the results and decide for yourself whether you want to share them with your school district.  Please note that once you’ve approved the school district still gets to decide whether to accept those 3rd party results.  I still believe the better tact is to refuse testing knowing that it will NOT accurately depict your child’s cognitive ability!  You’ll sleep better! Not done, it won’t hurt your child!  Once done, it may!  

That said, in many states, IQ testing is required to receive services so parents remit to testing.  But, what many parents don’t realize is that based on their child’s score, they may also lose critical educational opportunities — such as inclusion, a research-based best practice for educating children with disabilities.  Though this practice is discriminatory in nature, many schools have the legal power to justify their exclusion of your child based on the standardized IQ testing performed. 

There are all sorts of examples of kids with cognitive disability ranging from severe to non-existent doing not just better but absolutely FABULOUS in Inclusion educational settings…  Children who would never have gotten the chance to learn side-by-side with their peers, despite it being the law, if IQ scores were the catalyst behind their acceptance into such a program.  The truth is, if you raise the expectations, your child with Down syndrome or any other disability will rise to the occasion and achieve more… All you need to do is give them the chance.

Research shows us that learning side-by-side with typical peers provides the best social, emotional and academic outcomes for children with special needs (as well as for children without).  If one test score has the power to deny your child this opportunity to be INCLUDED, I say fight it!  Take it from me, — from my experience — the scores will NOT reflect your child’s cognitive ability and, as they say in the legal world, the information can and will be (or may be) used against you (or your child) in deciding educational placement!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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3 Responses to Down Syndrome Awareness — More on IQ Testing

  1. starrlife says:

    Love these posts Maggie! SO informative and helpful! Just say no! Thank god my state doesn't require it- I know Arizona does and one family who got limited services because their child with DS was too high!

  2. Sharlene T. says:

    This is appalling… I hope you can get the results quashed from the records…

  3. Sharon says:

    I follow your blog, though don't comment often, but wanted to let you know how very much I appreciate the information you share. My son is 2 1/2 so we are just starting our communication with the school in anticipation of his transition to school. I have been taking notes from your posts and know they will be helpful to me and my little guy. Thank you!!

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