31 for 21: Day 2 ~ It's All in the Wording

This topic was courtesy of my husband's suggestion! Thank you, Honey...

My husband and I suspected since his birth that Levi was going to be diagnosed with Down syndrome. It took 11 long days to get confirmation of our suspicions and once we had it, we weren't sure of what to do with it. Should we tell everyone who would know Levi? Should we keep it a secret, disclosing it only on a need-to-know basis?

As a parent of a child with such a defined condition, and one which is usually fairly apparent simply by observing the individual, choices such as this can be difficult. On one hand, we wanted to simply put it out there so that we wouldn't have to go on explaining why he looks a little different or why he might be behind in development. On the other hand, it doesn't seem fair to him to label him so publicly at such a young age. In the end, we decided that it would be simpler to make a general announcement to those who would be interacting with or seeing Levi on a regular basis as well as our extended family. For everyone else, if they asked, we'd tell, but wouldn't be making a 'big' deal out of it.

Once we made the announcement, there was definite relief for some friends and family who noticed differences but didn't know how to approach us about it. Occasionally, people (strangers, acquaintences and family/friends alike) will refer to Levi or people in the Down syndrome community-at-large as Down's kids or Down syndrome kids. It's often an innocent error, but it can be hurtful to hear more emphasis placed on my child's diagnosis than him as an individual.

There are so many rules to follow these days in trying to be politically correct, but really what it boils down to is making considerations to be conscious of the feelings of other people. To refer to a child as a Down's kid as opposed to a child with Down syndrome is putting the diagnosis before the person and that just isn't right.

I wouldn't approach a patient in an oncology office and ask them about cancer people. If I wanted to talk to them about cancer, I would speak about people with cancer. I also have a child with an autism spectrum disorder and I don't refer to him as my autistic child. It may seem like an inconsequential difference to someone who doesn't know a person with one of these conditions, but if you are someone or care for someone who does, it can be significant.


From what I've seen, it seems as though people in the Down syndrome community are rather open to answering questions asked from an honest desire to learn. I know that personally, I don't mind just about anyone stopping and asking a question as long as it's tactful and not just for the sake of being nosy. But please, please remember that adults and children alike are people first ~ it's all in the wording!

Here is a link to the National Down Syndrome Congress's information on "people first" language; please do take a look...  People First Language