This is a message from Kori Shaw, creator of the Flourish Network for parents:
Right now, I am completing my research for the Down Syndrome Affliates in Action (DSAIA) talk. I’ve been doing a benchmark study on what information and materials women are given when they get a prenatal Down syndrome diagnosis. I’m focused here in the San Francisco Bay Area. I’ve gone to Stanford, etc. There is nothing here! No support, no materials. I’m absolutely astounded.
Would you be able to ask your blog readers about this? Did they receive a prenatal diagnosis? What was their experience? They can contact me through the flourishnetwork.org site, or you can share my email: firstname.lastname@example.org. Thanks!
I remember several years ago, when my book was just an idea floating around, one of the editors in NYC made the comment that my experiences were probably unique to Montana, and that if I’d lived closer to a big city, I’d have had a better time of it.
Which may, or may not, be true. I pointed out that Dr. Skotko’s (then recent) study about women’s experiences with the DS diagnosis delivery was very similar to my own, and that his study had included a wide range of respondents from all across the county.
And now, years later, it seems we still have work to do. I hope you’ll help Kori, if you can.