Image of a nuchal translucency test. Chapter Two opens with two scenes from a couple's first prenatal visits, shares how we received an unconsented-to false negative screen, and, then discusses some of the common reasons couples seek prenatal genetic testing. (You can catch up with all of Chapter 1, here). Feel free to leave a comment about your own initial experience with prenatal genetic testing and whether I've fairly summarized the common reasons parents agree to prenatal genetic Continue Reading
Archives for 2020
April 15, 2020
Caregivers of individuals with Down syndrome have one job when it comes to COVID-19
Based on the much higher casualty rate for individuals with Intellectual and Developmental Disabilities (IDD) as reported from the state of New York, caregivers of individuals with Down syndrome have one job when it comes to COVID-19: do not let your loved one get infected. Continue Reading
April 11, 2020
Chapter 1, Part 4
Juliet's Walk Team, 2013 Here is the fourth, and final installment, of Chapter 1. You can catch up with the previous installments here. We finish the first 24 hours of meeting Juliet, the outpouring of support we experienced in the hospital, an example from one doctor on how to counsel patients about Down syndrome, and an example from another on how to almost get punched in the face. Continue Reading
April 7, 2020
Disability Advocates Seek State Policy Against Discrimination in COVID-19 Medical Rationing
Advocates are seeking clear state policy to prevent discrimination when it comes to medical rationing decisions due to the COVID-19 pandemic. Continue Reading
April 4, 2020
Chapter 1, Part 3
My daughter, before her first dance recital Here is the third installment (you can catch up on one and two, here). After dealing with some emotion, we are buoyed by the immediate support we received, our first victory over expected delays, and our daughter gets named. Continue Reading
March 28, 2020
Chapter 1, Part 2
Juliet at 6 months (I believe) Here is part 2 of Chapter 1. In case you missed it, you can catch up where this part picks up by first reading part 1 here. This post describes the first few minutes after my daughter was born and two words were said that changed our lives. Continue Reading
March 27, 2020
The Stockdale Paradox & Coronavirus: pushing back against discriminatory rationing
New York Times COVID-19 Reported Cases Map, March 27, 2020 “This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.” Continue Reading
March 21, 2020
Chapter 1, Part 1
Juliet, on the day she was born Here starts a project that we'll see how long and well it goes, which will largely be based on your readership and feedback. Continue Reading
March 14, 2020
Coronavirus pandemic, discrimination, and cold reality
What can be expected as the coronavirus pandemic expands, with more and more positive cases being reported? For those with Down syndrome, they should expect discrimination and, therefore, should plan to deal with this cold reality. Continue Reading
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