Ask Amy: Conversations about Down syndrome feel awkward

Dear Amy: Our family has/had three members with Down syndrome; my youngest sister was born with DS in 1968, and passed away in 2016.

I have a cousin with the condition, and my daughter and her husband have a son (our grandson) with Down syndrome.

I've been involved in the Down syndrome community for many years. I have a teaching degree in special education and was a special education educator for years.

Even with a greater socially open acceptance, I still experience social awkwardness when the topic of DS comes up.

Although I am perfectly comfortable chatting with others about Down syndrome, I don't know how to handle situations when others are uncomfortable.

When meeting someone for the first time, if I mention that we have a grandson with DS, the other person often looks like a "deer caught in the headlights.”

They don't know how to respond, and the conversation quickly becomes awkward and uncomfortable.

I could choose not to say anything in the first place, but then avoiding the obvious can also be uncomfortable.

It's hard to know if the other person would like to know more, or if they are anxious to change the subject.

Sometimes, if I encounter a person with DS and their family, I would love to approach them and say “Hi,” perhaps comment or ask questions if they seem at all receptive – but I often have a problem getting a feel for that, too.

Your thoughts?

– Tongue-tied in Denver

Dear Tongue-tied: Although one of my favorite family members was born with Down syndrome, I approach your question with an awareness that is far less intimate than yours.

And just as you and I are likely very different from one another, no two neurodivergent people are alike, either.

You should ask yourself what you are looking for in a response from other neurotypical people.

Would you like them to say, “Oh, that’s interesting,” ask about your grandson’s schooling, or ask, “What’s that like for you?”

My overall point is that if someone I’m meeting for the first time tells me that their grandchild has curly red hair, is a musical prodigy, (or rides horses, or is hiking the Appalachian Trail), I’m most likely to assume that same darting eye look, because without further context, a specific response doesn’t necessarily spring to mind.

Not knowing what to say doesn’t always mean that people are uncomfortable. Sometimes it simply means that they’re processing a statement with no relatable context attached.

If you love someone with Down syndrome (as I do), you will be drawn to others with Down. In that case, you should communicate your own friendliness directly to that person, and if they have family members or friends with them, you can gauge their willingness to interact with you by being open about your own family members.

Dear Amy: My boyfriend of four years (we live together) doesn't know when my birthday is and can't understand why he should even care about it. He quips, "Sometimes I don't even know my own birthday."

When I said I thought it was strange that he didn't care to know my birthdate, he accused me of "trying to start a fight."

It seems that if it isn't about HIM, he isn't interested.

Am I being too sensitive?

– In the Dark

Dear In the Dark: I have often remarked on how important I believe birthdays to be, because this is a day when others are invited to acknowledge and celebrate your very existence.

In balanced relationships, partners actually look for opportunities to celebrate one another, because (selfishly speaking) it feels good!

Yes, I agree that it is “strange” that your guy doesn’t claim to even want to know the date of your birth (this can be vital information that he might need to supply in case of an emergency).

Dear Amy: “Sad and Suffering” was upset because her partner did not cancel spring break plans with his grandchildren to stay home with her while she was on chemo.

She made it sound like he had abandoned her in her hour of need but Amy, spring break only lasts for one week.

So for that one week, her daughter stepped in to help.

Judging by her expectations, maybe he needed that one week away.

– M in Ithaca, NY

Dear M: “Sad and Suffering” was panicking over a cancer diagnosis. Perhaps she felt abandoned because of the way her partner was responding to her fears, overall.

Regardless, many readers agree with you.

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(You can email Amy Dickinson at askamy@amydickinson.com or send a letter to Ask Amy, P.O. Box 194, Freeville, NY 13068. You can also follow her on Twitter @askingamy or Facebook.)