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At Home with Down Syndrome (2008)

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Re: At Home with Down Syndrome (2008)

#91

Post by throwawaysea »

nvarsj wrote: post #6

I think that Down Syndrome is a very misunderstood syndrome. The way it makes you look dominates how people think about you, without even knowing you. I interact with someone online who has Down Syndrome. It really changed my understanding of it. He can articulate very well when writing, and has a deep passion and understanding on some topics we discuss (like music...). If he hadn't of told me he had Down Syndrome I…

> This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. [...] I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives.

I get what you're saying when you mention living a fulfilling life, but there is an impact to others as well. A couple I know decided to have one last child late, and unfortunately had a Down Syndrome pregnancy. Abortion was out of the question for religious reasons. They took joy in the pregnancy, and approached it with lots of motivation. Early on, they got a lot out of the simple joys of raising their Down Syndrome child, which others in this discussion have referenced. However it became more of a problem over time. There is a spectrum of functionality for those afflicted with Down Syndrome and some children have the capability to be more independent, or more manageable, while others don't.

In this case, although things started off well, it became apparent that the child would never be functional enough to be independent in any way, despite lots of efforts and investment from the parents. The situation created large stresses and constraints on the family - the parents, the siblings, their friends, etc. It changed what activities they could hold as a family, what social functions they were invited to, where they could live, and so on. Ultimately it destroyed their marriage and has created a lot of complications for them now, in terms of taking care of their now adult child.

My exposure to this basically confirmed that I would choose abortion if faced with the same situation, as the burden created on others' lives is simply too much.

Re: At Home with Down Syndrome (2008)

#92

Post by 2lwxxtj »

canam wrote: post #57
2lwxxtj wrote: post #51

Earlier quoted context omitted.

If I were to ask if you'd prefer that your normal son had been born with Down Syndrome, would that be an easier question for you to answer?

It's really not a different question. Either way if my other son also had Down Syndrome, I would accept him and love him for who is. That's our job as parents, right? BTW, our odds of having our first son with Down Syndrome and autism were about 1 in a million (maybe higher). Our odds of having a second child with Down Syndrome were 1 in 100. That didn't stop us. I don't mind answering questions about our experience.…

As a parent, it is terribly hard to imagine your child not being there. I suppose what I'm curious about is, knowing what it's like to raise a child with Down Syndrome and what it's like to raise a child without, if you hadn't had either child yet, or perhaps were to have a third child, would you have a preference, and if so how strong of a preference?

Re: At Home with Down Syndrome (2008)

#93

Post by itsananderson »

nemo44x wrote: post #90
patwolf wrote: post #19

My late uncle was born with down syndrome in the '40s. I saw a letter written by the doctors after he was born saying that he was a "mongolian idiot" (apparently a common term back then) and suggesting he be institutionalized. In some ways it feels like we as a society have positively progressed since then, but reading about how down syndrome is commonly dealt with today makes me doubt.

Many of these types of words had functional use at one time. If you check Ellis Island immigration records you’ll see people classified as “idiots”, “imbeciles”, “morons”, and other similar terms based on an aptitude test administrated. Those 3 terms describe different levels of perceived intelligence. Of course as they often do, these terms of classification became derogatory after people used them as an insult.

"idiot" may have been a relatively innocent medical term, but "mongoloid" has a very racist history as a way to describe people with Down Syndrome (https://en.wikipedia.org/wiki/Mongolian_idiocy), including a popular pseudoscientific theory that people with Down's were a result of "Caucasian" interbreeding with supposedly more primitive "Mongoloid" races https://en.wikipedia.org/wiki/The_Mongol_in_Our_Midst

Re: At Home with Down Syndrome (2008)

#94

Post by notretarded »

millisecond wrote: post #26
yhoneycomb wrote: post #21

Earlier quoted context omitted.

Just curious could you give examples of them being witty?

Different situation but I have a 6yo with downs and this rings true to me. He’s always trying to crack a joke. He’ll say loudly “good night Uschi!” (his grandmother’s nickname) to my wife with a grin on his face like he made the funniest joke. Not Seinfeld over here but we laugh pretty hard.

Seinfeld wasn't funny anyway

Re: At Home with Down Syndrome (2008)

#95

Post by loveistheanswer »

YeGoblynQueenne wrote: post #88
dang wrote: post #65

Earlier quoted context omitted.

It's a tradeoff. I get the intention, but in the long run this way of thinking does more harm than good. It compounds into the bureaucratic kind of discourse that tries to force people to be good, or to hide badness behind rigid rules. The heart doesn't function this way, and it's the heart that we need when relating to each other and when dealing with profound human issues like the ones in this thread. Trying to san…

I like your analogy of an immune system etc. and I bet you're one of the people on the internets who have thought the hardest about these issues. But to be honest in this case I think the OP was just being mean to you.

Laughing at people who are trying to be mean to you can be a more practical and healthy reaction than internalizing and mirroring their meanness.

Kevin Hart talked about how the comedians he came up with throughout his career would incessantly assault eachother with insults, and how this in turn gave him great self confidence and the ability to laugh off anyone who tried to insult him.

Re: At Home with Down Syndrome (2008)

#96

Post by paperwasp42 »

dang wrote: post #65
blendergeek wrote: post #64

Earlier quoted context omitted.

While you may find the statement humorous, it uses Down Syndrome as a form of an insult. This could be highly offensive both to people with Down Syndrome and to their friends and family.

It's a tradeoff. I get the intention, but in the long run this way of thinking does more harm than good. It compounds into the bureaucratic kind of discourse that tries to force people to be good, or to hide badness behind rigid rules. The heart doesn't function this way, and it's the heart that we need when relating to each other and when dealing with profound human issues like the ones in this thread. Trying to san…

>Each individual move to exclude dirt or kill germs is impeccable—beyond criticism, lest one be accused of favoring germs—but the endgame is sterile and leaves us vulnerable to worse ailments. Cracking down sternly on everything that is "not appropriate" and "could be offensive" is not taking us to a good place—it's making us meaner and colder, and even in many cases crueler (I'm not talking about you). Online discourse badly needs a way to get off this train. Maybe we need to risk some injury by jumping off before we crash.

Just have to say, I greatly appreciate this response, and it expresses a lot of my personal thoughts in a way I've always struggled to.

As someone with a neuromuscular disease, I make quite a few "cripple" jokes, and while most people get the self-deprecating humor, I occasionally run into people who berate me for being inappropriate, since "other disabled people may find it offensive." Those "occasional" encounters have tripled in frequency in recent years, and it's left me feeling a bit unsettled.

Logically, it shouldn't make me feel unsettled--I mean, people are literally saying, "I respect people like you so much, I don't want to hear ANYONE say mean things about them." But your response puts it beautifully--it's not the individual encounters that make me unsettled, but the over-arching environment those seemingly well-intentioned encounters create.

Re: At Home with Down Syndrome (2008)

#97

Post by BrandoElFollito »

nemo44x wrote: post #87
robertlagrant wrote: post #8

Based on her in utero sonar scans, and her proportional leg measurements, our youngest, Grace, was flagged to us as perhaps going to be born with Down's Syndrome. That wasn't the case in the end, but at the time it was presented as an earth-shattering possibility to us. That was tough, but we'd resolved long before to not let info like this affect anything, other than needing to make different life decisions, and to…

One of the advantages (against the many disadvantages) of IVF is the available genetic and chromosome testing of a few days old blastocyst. It makes the decision of discarding much easier than if the screening is done in utero.

> One of the advantages (against the many disadvantages) of IVF is the available genetic and chromosome testing of a few days old blastocyst.

Could you please expand a bit on that?

Re: At Home with Down Syndrome (2008)

#98

Post by BrandoElFollito »

rubidium wrote: post #39
nvarsj wrote: post #6

I think that Down Syndrome is a very misunderstood syndrome. The way it makes you look dominates how people think about you, without even knowing you. I interact with someone online who has Down Syndrome. It really changed my understanding of it. He can articulate very well when writing, and has a deep passion and understanding on some topics we discuss (like music...). If he hadn't of told me he had Down Syndrome I…

It’s effectively genocide and quite damning on society. I don’t put it squarely on the parents because it is so difficult. My neice has downs. Interactions with her are about the here and now. Joy and life. Fun and wit. Not plans and efficiency and production. Those with downs are modern day prophets for the rest of us to expose the soul-destroying utilitarian ethics of modern society... and we’re killing them!

> It’s effectively genocide

I would say that this is effectively getting rid of a batch of cells.

It depends on your culture, vision of the world etc.

Re: At Home with Down Syndrome (2008)

#99

Post by BrandoElFollito »

fodmap wrote: post #4

'Campeones' (Champions), directed by Javier Fesser in 2018, is a beautiful movie inspired by 'Aderes' team in Burjassot (Valencia, Spain), a team created with people with intellectual disabilities, some of them with Down Syndrome. https://en.wikipedia.org/wiki/Champions_(2018_film)

I found the movie average, except for the last part (I will not spoil it). That part really gives a special, positive view of the world.

Just for that the movie is really worth watching.

Re: At Home with Down Syndrome (2008)

#100

Post by BrandoElFollito »

mensetmanusman wrote: post #68

Interesting how scientific technology gets used in various cultures. Ultrasounds are illegal in some countries because people abort based on gender due to their cultural view of humanity. Western secular society looks at humans more as mechanistic units in an economic machine instead of as spiritual beings with inherent value, so it’s no surprise that 90% of downs tests result in an abortion.

> Western secular society looks at humans more as mechanistic units in an economic machine instead of as spiritual beings with inherent value

As a member of the "western secular society", I do see humans as humans, not economic machines.

I also let these humans make their own decisions based on what they want in life. Some people will want to have children that are disabled (even writing this sounds horrible), others will not.

Condemning someone because they have another view on life drives violence and mistrust. I am surprised that someone who sees people as spiritual beings with inherent value would have such a point of view.

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