Down Syndrome Awareness and Advocacy Month Day 17: How to Change the Conversation

A few days ago I wrote about the need for a change in the conversation that occurs between medical professionals and parents receiving a new diagnosis, but how do we go about facilitating that change?

For parents who have received a diagnosis, one way is to let your doctors know what they did right and/or wrong during the diagnosis process. The #DearDoctor campaign through DSDN is helping give moms a voice and the courage to do this.  This link discusses how you can write your own letter:

http://www.dsdiagnosisnetwork.org/birth

For any mother who feels passionate about this topic either from personal experience or from knowing someone who has gone through it, you can also share information from DSDN with the medical professionals with whom you have contact. You can request several different types of information (free of charge) to share with medical professionals and/or therapists.  I did this last March 21 for World Down Syndrome Day. I took blue and yellow ribbon cookies, DSDN materials, and copies of the book The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood by Jen Jacob and Mardra Sikora; and Jackson and I visited both my OB and his pediatrician that day. I also recently shared DSDN literature with the genetic counselor we have worked with during this current pregnancy. She and I had a wonderful conversation about how to turn sharing a diagnosis with a family into a more positive experience.

Request the materials here: http://www.dsdiagnosisnetwork.org/local-support

Finally, the change in conversation needs to go beyond what happens between doctors and parents. We can help change society by not being afraid to discuss Down syndrome with children. My next post will focus on some ideas on how to talk about Down syndrome with children who may have questions.