The Northwest Down Syndrome Association is working closely with partners here and across the country to create best practices for medical providers offering genetic testing or handing out a diagnosis of Down syndrome.
We know from conversations with families in our community, as well as research by Dr. Brian Skotko and others, that medical providers rarely have good, up-to-date information about Down syndrome and the realities of our lives. Often information received by parents is based on very negative, outdated stories and stereotypes, and the full range of choices may not be presented in a neutral way.
The NWDSA has a small collection of stories from local families about the process of receiving a diagnosis of Down syndrome. We are in the process of putting these stories together into a book to share with local hospitals in an effort to affect their policies and procedures around prenatal testing.
We need more stories for this effort! If you have the time this weekend, we urge you take a few minutes to sit down and share your story with us. This is a very timely and critical conversation. Please join us and be a part of positive change!
Please send your stories to firstname.lastname@example.org. If you have concerns about privacy, please let us know and we will work with you to make sure you are comfortable with the way your story is shared. Please consider the following questions when writing your story, and feel free to include a favorite photo:
- Was your experience with your medical team positive, negative or neutral?
- Do you feel that you receive quality, up-to-date information?
- Was there a thorough conversation about all the choices you faced?
- Did you feel pressure to make any particular choice?
- Did you get connected to a local parent group such as NWDSA, or with another family?
- Looking back on that moment, what worked well for your family, and what didn't work?
We will be hosting a meeting at the NWDSA Resourcefulness Center on Monday, March 12th at noon, and invite you to join us if you are interested in digging in a little deeper and working along side us on this issue. We would love to have you!
And finally, don't forget to join us on March 21st to celebrate World Down Syndrome Day! More info coming soon on our website. In honor of World Down Syndrome Day we would like to build a Wall of Pride on our website. If you would like to be included, please send a photo of your family and a paragraph of pride and celebration to email@example.com">firstname.lastname@example.org.