At Home with Down Syndrome – Caitrin Nicol –The New Atlantis

Boston Madonna and Child

Boston Madonna and Child

At Home with Down Syndrome – The New Atlantis.

“.. the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent. The alphafetoprotein maternal blood-serum test followed by amniocentesis are standard practice in prenatal care for women over thirty-five, who have an elevated risk of conceiving a baby with Down syndrome. Eighty percent of babies with Down syndrome are born to younger women, however, due to their higher overall fertility rate, and the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that all pregnant women be offered screening for Down syndrome. While ACOG insists on its neutrality with regard to abortion, it is not difficult to interpret this move as an effort to reduce the number of individuals with Down syndrome who are carried to term. Obstetricians are not well trained in explaining the diagnosis and have little if any clinical experience with individuals with a developmental disability, and medical school deans indicate that such training is not a priority. A 2004 survey of mothers of children with Down syndrome, published by then-medical student Brian Skotko in the American Journal of Obstetrics and Gynecology, reported that the prenatal diagnostic process sorely lacked information on the nature of the syndrome. While the physicians did a satisfactory job of explaining the actual test procedures, the women felt that a discussion of the symptoms and the potential of individuals with Down syndrome was either cursory or delivered with highly negative overtones. One was shown “a really pitiful video first of people with DS who were very low tone and lethargic looking” and then told that “our child would never be able to read, write, or count change.” Others regretted that they had not been offered contact information for other parents who have children with Down syndrome — connections that, where made, proved to be one of the most important and supportive factors in the mothers’ decisions to continue their pregnancies.”

I saw Ted Barr smiling..

Oil painting by Ted Bar 3/87--James Kelly collection

Oil painting by Ted Bar 3/87–James Kelly collection

I saw Ted Barr smiling
That self-assured smile that Teddy smiled
Full of himself and his friends
I saw Ted Barr smiling down a long shot freeze frame
off the railroad tracks from the back of the Hersey street house
Where you could see half way through this little jumbled up town
I saw Ted Barr smiling at an empty paint spattered easel
And the guitar stand standing now on Union street
But I saw Ted Barr smiling from Clancy’s Pub
In Dublin town and I saw Ted Barr smiling
in the Log Cabin on the Plaza & the “Good” Club &
I saw Ted Barr smiling at the oars in the small row boat
through the morning mist and the glass surface of Immigrant Lake
I saw Ted Barr smiling now a true new immigrant on the shore we have yet to go.
It’s where I saw Ted smiling on his friends that loaded Teddy grin..
I saw that smile on Skidmore street where a brush with death
Brought on an on rush of oil and sweat and sweet fullness and life, lugubrious
Thighs and breast and haunch and thigh and pert cheeked tongued
Women on canvass, I saw Ted Barr smiling on oil and death and long legged
Sex in our life’s dance on pity and blood and the half-light of the last of the last
Summer of a Century of so damn much pain –I saw Ted Barr smiling
Teddy who’d never got caught in the cob web of what ‘ought’ to be
I saw Ted Barr smiling at the piano keyboard on Union street
I saw Teddy smiling the blues, I saw Ted smiling at us
I saw Ted Barr smiling at his one true piece of art— his own Amanda
Proud father he was I saw Ted Barr smiling at us that loaded fat Teddy grin
& I can’t pound these keys hard enough to let you know that howling wolf growl
because I saw Ted Barr smiling…

teddy 2