Down Syndrome Awareness and Advocacy Month Day 14: Changing the Conversation

Two days ago I shared a letter I wrote to the doctor who delivered Jackson's diagnosis. Our experience highlights an all too common occurrence where new or expecting parents are greeted with negative words when describing not only their child's diagnosis, but also their child's future.

There needs to be a change in conversation.

Instead of discussing a mother's "risk" of having a child with Down syndrome, an easy switch of one word could take away much of the negative connotation. While it is a doctor's responsibility to discuss this topic with parents, by using the word "chance" instead of "risk," the inherent negativity is diminished.

Instead of handing parents a long list of things their child may never do, doctors should become more current on the research showing all things that ARE possible for people with DS.

For instance, more and more adults with DS are living semi- or fully-independently. More are able to get their driver's licenses. More are attending higher education programs. In fact, did you know there are over 200 college programs for people with intellectual disabilities?

Doctors also often give outdated information regarding our children's capacity to learn. Parents are often told their child with DS won't be able to read. While our children do face some challenges educationally, they are strong visual learners and, when taught from an early age, often learn to read quite well.

In fact, we have been working on sight words and letters with Jackson more consistently this summer, and he has already picked up at least 15 words that he can recognize by sight. While he doesn't say all the words yet, he shows he knows them by signing. He also knows many letters by sight and can make their sounds. And I know other children around Jackson's age who can name and label all fifty states on a map and the planets in the solar system! I think I need to step up our game!

I understand that doctors need to inform of the challenges that can come with a diagnosis of Trisomy 21, but my hope is that the conversation they have with new or expecting parents changes to become more balanced and updated to also include the amazing things our children can and will do.