Ds Diagnosis--What to Say to Others

As parents, it is tough enough to navigate our own feelings when our child is diagnosed with Down syndrome, let alone manage other people's reactions. We've all wondered at some point just how and when we should reveal our child's diagnosis to others.

I remember thinking, "Am I required to tell ____ that Bridget was born with Down syndrome?" (Sometimes it was a friend I hadn't seen in a while, sometimes it was a stranger in the grocery store or an acquaintance at the dance studio or the school. I figured most people who knew even vaguely of our family would know, as word of such things seems to spread like wildfire.)

I also wasn't sure what to say. And then there were the many things people said to me that threw me for a loop.

I decided that I would tell people if I felt like it, and it made sense. If I didn't feel like explaining, I just didn't say anything about her diagnosis. And I made a promise to myself that I would not feel badly about that. In other words, I started to cut myself some slack. I know I am a great advocate for Bridget, and I am her translator in many ways. I love her and believe in her wholeheartedly, and will speak up when it makes sense to do so--but I don't always have to take on the world. (Some of our best advocacy work is just being out there, providing one example of a loving family living a happy and full life which includes Down syndrome.)

People make insensitive comments so often without even realizing it. Laurie wrote about it here. She asked for suggestions on what to say when this happens, and I commented on her post:

When Bridget was a baby, I was still trying to absorb her diagnosis and figure out how to tell others about it. We all need to find things to say that fit our personality and also the situation.

I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.

I now have all sorts of statements in my "bag".

I am usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for Bridget and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type).

It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of delays associated with the diagnosis, physical features, common health issues, improvements in medical care for people with Ds, current terminology, new opportunities & advancements, etc.) People will ask about those things. Most people will not have personal experience related to Down syndrome. Your child might be the first person they've encountered with the diagnosis.

Here are some ideas:

If someone seems to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome" or "She is developmentally delayed". In case they can't see for themselves, I always follow with: "She is awesome".

I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)

When people comment about physical features or health issues ("she doesn't look like she has Down syndrome" or "she is so high-functioning...she must not have a severe case"), I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in physical characteristics, health and abilities in people with Down syndrome."

A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges" or "Everyone has strengths and challenges. She does, too."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do. Only Bridget can tell us how far she will go and what she will accomplish."

I will always highlight her unique personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.

Feel free to use any of these statements (in whole, or pieces and parts).

Does anyone else have input? How do you tell someone about your child's diagnosis for the first time? What do you say when someone casually asks about some facet of your child having Ds? Do you have a quick comeback when someone makes an insensitive or ignorant statement? Do you have comments "in the bag" for just such an occasion?

Please comment here to add more ideas...

*Coming soon...Talking to Children about Down Syndrome