These are the words of Robin Ivy, Mother to Eden, aged 7, who has Down syndrome.
"My daughter was tested to have an IQ of 102 when she was 5 years old. She "refined" kindergarten, so is now in the 1st grade. She goes to 2nd grade for literacy though. She goes to a school for kids with learning disabilities and is the only child there with Down syndrome. I needed a professionals confirmation of her abilities in order to get her into this school. If we would have listened to all the other "professionals" she would be in a secluded class and believed to have an IQ in the 50's. High expectations are the key to helping our kids live up to their full potential (in my opinion).
"The psychological assessment states the following as the "assessment procedures":
- Behavioral Observations (3 x 20-30 minute sessions)
- Wide Range Achievement Test- Fourth Edition (WRAT-IV)
- Peabody Picture Vocabulary Test _ Fourth Edition (PPVT-IV)
- Cognitive Subtest of the Developmental Assessment for Young Children (DAYC)
- Kauffman Brief Intelligence Test - Second Edition (KBIT2)
- Parent Report
- Review of Occupational Therapy Assessment and School Progress Evaluation
"The licensed psychologist wrote the following paragraph regarding testing: "It should be noted that appropriate accommodations, *per the test manuals*, were utilized as well as:
2)covering of extraneous visual stimuli,
3) pointing to each letter/word to be read,
4) several brief testing sessions, and
5) non-standardized order of administration to increase motivation and decrease frustration.
"Eden had been tested twice before I found this psychologist. I knew, with all of my heart, that she was no where near as low as in the 50's which is what the other tests found. I also knew that her delays, in all motor skills, were the reasons those tests were not a fair demand on her. I was pretty sure that accommodations could be made for a child who was delayed in one or two areas. A paraplegic person has an IQ. Someone who is deaf and/or can't speak also has an IQ. I could go on and on. right? Therefore, why not use methods to accommodate all her delays. I know that its a lot to ask of the professionals, but not entirely impossible.
"So, many simple things were done to help Eden prove her cognitive abilities, other then the things she listed above. For instance, a chair and table that were the right size, tests that allowed for pointing at the answers rather then speaking all of the answers: allowing me to sit in during the tests to help the psychologist understand Eden's speech, not to mention putting her at ease during a potentially stressful experience. Eden is anything but defiant but extremely willful. She would appear to cooperate. She is very sweet and not one to throw tantrums (in front of strangers anyway) but would consistently give answers without paying attention to the questions.
"This wonderful and particularly observant psychologist, noticed immediately that Eden's responses were impulsive and she wasn't evaluating all of her choices. So she asked Eden to point to all the possible choices before giving her answer. Where the other psychologists just automatically took points off, this lady realized what Eden was doing I can't tell you how lucky I feel that we found this psychologist. She believed me when I talked about my daughter's abilities and didn't assume to know her because she had Down syndrome.
"Its like everyone else just wanted to prove what Eden *couldn't* do. Unfortunately, our kids have to work harder then typical kids to prove what they can do. So many people may actually mean well, but never really see our individual kids. I just wanted her educational plan to be more about her learning differences versus a cognitive deficit type of plan. The testing gave me the confidence I needed to advocate for this."
The full text of the following article is provided in the attachments below. It relates to a proposed better method for conducting IQ testing with those who have an intellectual disability.
A solution to limitations of cognitive testing in children with intellectual disabilities: the case of fragile X syndromeDavid Hessl, et al.
Journal of Neurodevelopmental Disorders, Volume 1, Number 1 / March, 2009, pp.33-45.
Intelligence testing in children with intellectual disabilities (ID) has significant limitations. The normative samples of widely used intelligence tests, such as the Wechsler Intelligence Scales, rarely include an adequate number of subjects with ID needed to provide sensitive measurement in the very low ability range, and they are highly subject to floor effects. The IQ measurement problems in these children prevent characterization of strengths and weaknesses, poorer estimates of cognitive abilities in research applications, and in clinical settings, limited utility for assessment, prognosis estimation, and planning intervention. Here, we examined the sensitivity of the Wechsler Intelligence Scale for Children (WISC-III) in a large sample of children with fragile X syndrome (FXS), the most common cause of inherited ID. The WISC-III was administered to 217 children with FXS (age 6–17 years, 83 girls and 134 boys). Using raw norms data obtained with permission from the Psychological Corporation, we calculated normalized scores representing each participant’s actual deviation from the standardization sample using a z-score transformation. To validate this approach, we compared correlations between the new normalized scores versus the usual standard scores with a measure of adaptive behavior (Vineland Adaptive Behavior Scales) and with a genetic measure specific to FXS (FMR1 protein or FMRP). The distribution of WISC-III standard scores showed significant skewing with floor effects in a high proportion of participants, especially males (64.9%–94.0% across subtests). With the z-score normalization, the flooring problems were eliminated and scores were normally distributed. Furthermore, we found correlations between cognitive performance and adaptive behavior, and between cognition and FMRP that were very much improved when using these normalized scores in contrast to the usual standardized scores. The results of this study show that meaningful variation in intellectual ability in children with FXS, and probably other populations of children with neurodevelopmental disorders, is obscured by the usual translation of raw scores into standardized scores. A method of raw score transformation may improve the characterization of cognitive functioning in ID populations, especially for research applications.