“We have some good friends who have a daughter with DS (she is Leo's age) and I don't want to offend but am interested in how their daughter is doing (just as I am about their son who does not have DS). I feel a little uncomfortable only because I don't want to hurt anyone's feelings - do I ask about the DS specifically, or ask generally how she's doing?”
This is a great question. I definitely think it depends on the person who it’s being asked of. I’m a very open person, sometimes probably to a fault, but generally speaking, I like talking about Leo. I appreciate when people want to know how he’s doing, what he’s up to. While I don’t feel that I need to be the “poster parent” for Down syndrome, I do feel a bit of a responsibility in the sense that I know there are a lot of misconceptions out there about Down syndrome. Leo might be the only person with Down syndrome that people ever meet. This is not to say that Leo needs to stand for every person with Down syndrome, but I like the idea of Leo putting a human (and pretty darn cute, if I do say so) face to something that is so often feared and thought of as a tragedy.
I think a general, “how’s x doing in school? Where does she go? What’s the program like?” is a good start. I imagine the conversation will take off from there and it should be easy to gauge how open the parents are to talking about their child. Some people are more open than others, Down syndrome or not.
Suz also asked:
“In a broader sense, what types of questions do you think are offensive to ask a parent of a child with DS? What do you wish people would ask?”
My all-time number one, most hated question is without a doubt:
“How severe is the Down’s?”
Just, yuck. And also? Please don't call it "Down's." Or "the Down's." I've even heard medical "professionals" refer to it as such, in fact they do so a lot. It's Down. After John Langdon Down.
And I have been asked the "how severe?" question a lot. And I know that people mean well, but it is not a good question to ask. It's impossible to answer since most kids with DS have an incredible range in their abilities. Leo happens to be speech delayed but he can write his name and sight read dozens of words. And he can run like the wind (trust me). So how do I answer the "severe" question? And really, who cares?
Another question people like to ask, which does not bother me but might bother some is “Did you know about the DS in advance?”
It’s a totally fair inquiry, maybe bordering on a tad personal, but nonetheless I have been asked it many, many times. That would be your call, not sure how close you and your friend are.
Which brings me to another “what not to say.”
Do not ask, "if you’d known about the DS, would you have had him/her?"
This actually happened to me. And it upset me for weeks afterward.
Sometimes, I’m convinced that people Just. Don’t. Think.
And also, I like People First Language. It can get a little cumbersome and annoying and overly PC-sounding sometimes, but I just appreciate the idea that people are people before they're "labels."
Jane is not autistic, she has autism. Leo is not a "Down syndrome boy" or a (even worse) "Down's child." He is a boy with Down syndrome. He is a boy, first. You know what's funny? Those aforementioned medical professionals are some of the worst people with this. They love to label. I'm sure because it's quick and easy for them to use shorthand with everything, even people, but come on. Take the time and use the extra few words.
Do you know what no one has ever asked me that I really wish they would?
"What do you wish you had known after Leo was born that you know now?"
For that question, I think I could write a book.
Thanks for the questions everyone! More answers to come.
