[vtbassmatt]

Why do you think that people with Down syndrome are “utterly dependent on [their parents] for their entire lives”? All children come with a severe “emotional and mental cost”, have you seen the world today??

We knew with (well beyond) reasonable certainty that our son would have Down syndrome and chose to continue the pregnancy. We’re not religious and not part of any pro-birth political cohort; it was absolutely an affirmative choice.

[landl0rd]

Because I grew up across the street from a forty-year-old woman with it. She will be dependent on her parents for the rest of her life. Still lives there. They make the best of it, but frankly, their lives pretty much suck (though she seems very happy with hers). They are no longer people but first and foremost caregivers. All parents have a stage of that but it’s temporary.

I’d imagine some downs patients have more or less functionality and independence, but seems pretty much the whole distribution is just too low for them to be independent.

If y’all are happy, it’s not really my place to comment on that. But this is one of the things that makes me nervous about having kids in future.

The issue isn’t that like all kids they come with emotional complications and caregiving. The issue is I saw these neighbors spend literally two decades trapped in Groundhog Day. They never progressed past it. Well into retirement and they were stuck in this. I’m not sure if they’ve passed now or where she is, but if they’re still alive, I’d guess they’re still in Groundhog Day. Same thing forever.

Years ago, my uncle worked in a home with a group of people with these sorts of conditions. Many were downs and needed help but families would or couldn’t provide it. It’s not just needing more attention, you have to change the way you live. Like one day, two other guys were taking them on a trip somewhere. On the way back they stop for gas, one guys filling up, the other runs in and grabs a slurpee. One of the downs guys says he wants a slurpee (he’s not supposed to have them for whatever reason.) no, can’t have that. But he wants a slurpee. Repeat ad infinitum. Winds up they’re a block away driving and this guy tries to jump out of the car to run back and get a slurpee. Uncle explained to slurpee guy later you literally can’t get anything without giving it to everyone. It’s like kindergarten logic. You have to live that way. Every day, forever.

[vtbassmatt]

I have another reply in this tree talking about outcomes and independence being much worse not even all that long ago. I won’t repeat it all here but it squares with what you observed in an older neighbor growing up.

Also: did they tell you they were miserable or felt stuck in Groundhog Day? If not, then it’s not a safe assumption. AFAIK many caretakers and family members report satisfaction with their lives despite the added complications. (Maybe your neighbors really were miserable, and if so, just know it’s not the norm anymore.)

The early genetic testing for Down syndrome is pretty accurate now. If it’s still a major worry for you about having kids, get the testing done early enough to terminate. I strongly hope that no one terminates out of ignorance about the realities - both positive and negative - of Down syndrome, but have no problem at all with informed choices.

People with Down syndrome aren’t “downs” or “downs patients”, though. It’s easy to dismiss this as language policing or, as another thread hinted at, performative. But the words we use and how we view the world are part of a feedback loop on each other. Synecdoche-izing people as merely a medical diagnosis colors whether society treats them as full members or not. And unlike, say, the Deaf or autism communities, it’s not currently a subculture or something that many people with Down syndrome identify as.

As an internet stranger, I’m asking folks to consider using “person with DS” instead of “DS patient/person/etc”.