


Dear Amy: Our family has/had three members with Down syndrome; my youngest sister was born with it 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 it. I’ve been involved in the Down syndrome community for many years.
Even with a greater socially open acceptance, I still experience awkwardness when the topic of Down syndrome comes up. Although I am comfortable chatting with others about it, 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 Down syndrome, the other person often looks like a “deer caught in the headlights.” They don’t know how to respond, and the conversation becomes awkward. I could choose not to say anything in the first place, but 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 Down syndrome and their family, I would love to say “Hi,” perhaps comment or ask questions if they seem receptive — but I 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 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 means that they’re processing a statement with no relatable context attached.
If you love someone with Down syndrome, you will be drawn to others with it. 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 by being open about your own family.
Dear Amy: My boyfriend of four years 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. 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 it feels good!
Yes, I agree that it is “strange” that your guy doesn’t claim to want to know the date of your birth (this can be vital information that he might need to supply in 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.
Copyright 2023 by Amy Dickinson
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