From the News Page: Inspiraporn, the State of the Union, & Down Syndrome Health Care Guidelines

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Rep. McMorris-Rodgers prepares SOTU response holding her newborn daughter

From the News Page: Co-Chair of the Congressional Down Syndrome Caucus, and mom, Rep. Cathy McMorris Rodgers will deliver the Republican Response to tomorrow’s State of the Union address. Dr. Skotko delivers a Grand Rounds presentation on updated Down syndrome health care guidelines. A St. Louis OB writes about the new prenatal testing. A panel of parent/authors speak tonight at Columbia. And, a mom takes on Inspiraporn!

  • Representative Cathy McMorris Rodgers, co-chair of the Congressional Down Syndrome Caucus, will give the Republican response to the State of the Union address. This video and this article feature her and her being a mom to a son with Down syndrome.
  • Video  of Grand Rounds presentation by Dr. Brian Skotko, Co-Director of the Down Syndrome Program, Massachusetts General Hospital on updated health care guidelines for individuals with Down syndrome.
  • A St. Louis OB pens a column about the new prenatal testing saying “The test detects ‘bits’ of DNA from the baby that are in the maternal blood circulation” and that it is “extremely accurate;” both contrary to the lessons learned since non-invasive prenatal screening was introduced.
  • A mom takes on Inspiraporn, declaring that her son with Down syndrome doesn’t have super powers because of the extra chromosome.
  • A panel of parents who are also authors present tonight at Columbia University on “Parenting, Narrative, and Our Genetic Futures.” One of the speakers has a post today about being in NYC.

Comments

  1. My comment is in response to the Embracing Wade blogger. She implies that describing a child with Down syndrome can only be inspiraporn and abelist. I agree with her post in theory. Here’s the thing – I recently wrote a post titled How I Told My Seven Year Old Son He Has Down Syndrome. I told him he had super powers. In fact Down syndrome super powers. I did that because the center of his universe is The Avengers. So I took something that has great meaning to him – a group of people perceived as flawed who do heroic things. Developmentally my son is on target with his “typically” developing males peers in expressing his independence through play. My explanation was Fanboy not abelist. That explanation was specific to my son. If he worshiped Legos I am not sure where I would have gone. When my son hears the words Down syndrome now he flexs his muscles. My son has been teased and mistreated by a couple ed techs. The fact he goes to school everyday with his head held high is heroic to me. Not because he has Down syndrome but because he kicks ass. I do not see my son as special. I see him as powerful. ‘Super powers’ is part of our vocabulary and social understanding now. People in fact identify themselves by their ‘super power’ If my kid isn’t allowed that typical experience isn’t that abelist? Super powers are for everyone. I didn’t explain any of this in my post because it was inconceivable to me it could be misinterpreted.

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