Shifting the Perspective on Disabilities

by Christie Taylor from The Huffington Post:
If I was asked the question, "Was receiving the news your son had Down syndrome a life changer for you?" my answer would be yes, but that wouldn't be entirely accurate.
It's easy to look at a one big, notable experience and say that event changed my life. Yet, when I take some time to ponder my life changing moments, they are not big and notable, but small and simple.
These small and simple moments have come in the form of a joke, a laugh, or a smile. Though the moment was a brief sliver in time, it served as a pivot point, causing a shift in perspective. An internal shift in perspective has the power to change everything.
When my son, Wil, started kindergarten, he began having certain behavior problems. Kindergarten was overwhelming for him, and when he was tired or didn't want to do something, he responded by crawling under a table or plopping himself unmoving on the floor.
This behavior was affecting his learning, and was starting to disrupt the class. Though his assigned teacher's aide and I tried many different approaches, nothing had a lasting effect.
Over time, I worked myself into a high state of stress over these behaviors. I didn't know what to do and felt at a loss. In desperation, I talked to a friend from our Down syndrome support group about this situation. Her son is a few years older than Wil, and I hoped she would have some ideas on how to help him.
As I described Wil's kindergarten story to her, a big, calm, knowing smile spread across her face. She put her hand gently on my shoulder and said, "My son did that all the time! Don't worry! He'll outgrow it. This is what we did..."
Surprisingly, I found myself laughing with her about all the things I had only moments ago been feeling distressed over. This was a pivot point for me. My friend's knowing smile and shared story completely changed my perspective of the situation.

Dr. Skotko's response to GQ magazine's insensitive language

GQ controversy: Down Syndrome comment: MyFoxBOSTON.com

 from Children's Hospital Boston's Pediatric Health Blog:

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation.  Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.”  He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.



My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is.  “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities.  So, why do people underestimate their abilities?  It must be because they do not know someone with Down syndrome.

Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

The original GQ piece has been changed, removing the 'Down Syndrome' reference. No explanatory note appears on the page.

Cognitive Development and Down Syndrome: Age-Related Change

from aaiddjournals.org:

Cognitive Development and Down Syndrome: Age-Related Change on the Stanford-Binet Test (Fourth Edition)

A study in the May issue of the American Journal on Intellectual and Developmental Disabilities by researchers affiliated with the University of Queensland (Australia) examined Stanford-Binet test performance by a large group of individuals with Down syndrome.  Authors report that the performance of the study sample on Stanford-Binet subtests measuring crystallized abilities (the ability to use skills, knowledge, and experience)  tended to plateau early in adulthood, whereas the test of fluid ability (the capacity to think logically and solve problems in novel situations, independent of acquired knowledge) continued to increase beyond the age of 30.  Authors note that the trend they observed is in opposition to the general population in which fluid abilities typically peak in early adulthood while crystallized abilities continue to increase. (full text available at no cost with member subscription to AJIDD)

Growth models for subtests of the Stanford-Binet Intelligence Scale, 4th edition (R. L. Thorndike, E. P. Hagen, & J. M. Sattler, 1986a, 1986b) were developed for individuals with Down syndrome. Models were based on the assessments of 208 individuals who participated in longitudinal and cross-sectional research between 1987 and 2004. Variation in performance among individuals was large and significant across all subtests except Memory for Sentences. Scores on the Memory for Sentences subtest remained low between ages 4 to 30 years. Greatest variation was found on the Pattern Analysis subtest, where scores continued to rise into adulthood. Turning points for scores on the Vocabulary and Comprehension subtests appeared premature relative to normative patterns of development. The authors discuss development at the subdomain level and analyze both individual and group trajectories.