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At Home with Down Syndrome (2008)

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Re: At Home with Down Syndrome (2008)

#131

Post by BrandoElFollito »

nemo44x wrote: post #112
BrandoElFollito wrote: post #109

Earlier quoted context omitted.

> Yeah when the blastocyst is a few days old they can extract a few cells and cryogenically freeze the remaining blastocyst with minimal chance of having ruined it. Those cells are sent to a lab and screened for many chromosome and genetic defects. Would that part would be different from in utero tests? (short of the freezing of course) It has been 15 years that we did the tests (on amniotic fluid) so the world must…

I’m not sure on the first question but I imagine that yes, the same types of tests are conducted. As for any to-be parents - yes and I’d recommend it. You may find you both carry a relatively rare recessive gene that would give your offspring a 25% of having a certain disorder. This can guide your decision on if you want to go forward with natural fertilization and risk it (and make the choice after testing the cells…

> or opt for IVF to prevent the disorder (and all others that are testable)

This is a point I never considered (theoretically - I am a parent of teens so the question is over for me). I always assumed that IVF is much more risky (all things taken into account) that natural procreation but I have never actually gave a thought on that.

Re: At Home with Down Syndrome (2008)

#132

Post by laluser »

kingsloi wrote: post #23

edit: I hadn't really woken up when I first read the article, so I read it again after my morning coffee. I can't express how nice it was to read it, it sums up my experience perfectly. I'm teary eye'd writing this, I had just finished reading it, and then look behind me and see mom and baby on the sofa passed out next to each other, we've literally only been home about 15 hours, and I'm so happy seeing them together…

Thank you for sharing. I learned so much reading your through your blog. I hope you continue to post updates.

Re: At Home with Down Syndrome (2008)

#133

Post by austhrow743 »

remlov wrote: post #111
Daub wrote: post #11

I worked in a residential community consisting of many young people with various disabilities. Most of these had Down’s syndrome. From the OP... > Individuals with Down syndrome generally have outstanding social skills... Dam right! They were amongst the most compassionate, loving and witty people I have ever met. I remain humbled at their extraordinary humanity. Other things the articles mentions are also true. Cert…

I am 37, male, and can place both palms on the floor without bending my knees. I am definitely average in health and am sure this isn't unique, however, I am not discounting ligament laxity which is prevalent in individuals with Down syndrome.

You're aware that average in health for the mostly western audience of this website is overweight bordering on obese right?

Disregarding that though, I'm legitimately shocked to learn that anyone, fat or not, could do that without a regular stretching routine.

Re: At Home with Down Syndrome (2008)

#134

Post by canam »

smabie wrote: post #114
canam wrote: post #46

Earlier quoted context omitted.

As the parent of a child with Down Syndrome who is also autistic, I can say it is wonderful experience. He brings us great joy and love, despite his unique needs. I couldn't imagine that anyone who met him thinks he doesn't deserve to exist.

What does this mean? Like you don't think people should have the choice to abort?

My comment was in response to the question why would anyone want a child like that. There seems to be pressure to terminate pregnancies with Down Syndrome. Fear of the unknown drives the decision, and it is a non-controversial decision because society seems to expect it. Once you see past the disability and humanize them, it does seem cruel to terminate a pregnancy due to Down Syndrome. That said, I'm pro-choice and always support the right to choose.

Re: At Home with Down Syndrome (2008)

#135

Post by canam »

2lwxxtj wrote: post #92
canam wrote: post #57

Earlier quoted context omitted.

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?

Every child is different and has unique challenges. All parents here can attest to that. Regardless of disabilities, there are emotional issues, sub-culture issues, etc.

The biggest challenge is the lack of community support. I live in the US, and disability services are the first thing cut when ever there is a budget cut. Most workers who choose to work in the support industry make little over minimum wage, for their entire careers. That means high turnover. That leaves a lot of care to the parents and extended family. So financially there are extra costs (e.g. paying a sitter, for an adult child), equipment, and planning for support after you are gone.

There is emotional stress, but you can probably imagine that. One of my peeves is how casually people throw around the R-word. Then act innocent that they didn't mean to be insulting.

So yes there are challenges. I wouldn't want my son to be anyone else though.

I'm in my 50s, my kids are in their 20s. I'm not looking to have anymore kids. :)

Re: At Home with Down Syndrome (2008)

#136

Post by DanBC »

dang wrote: post #62
C06aka wrote: post #27

[flagged]

There are deep issues to discuss here. Flamebait and name-calling destroy that possibility, so please don't post like this. https://news.ycombinator.com/newsguidelines.html

Dang, this is yet another example of you making a comment to someone who is responding angrily to a person saying abhorrent things. Your continued defence of polite but disgusting comments pushes out people with different backgrounds, and entrenches fascists who can maintain a polite veneer over their scientific racism or misogyny.

It is unreasonable of you to say that people must remain calm no matter what the provocation is.

Your claim, that there are deep issues to discuss here, is repugnant when we're talking about eugenics.

Re: At Home with Down Syndrome (2008)

#137

Post by DanBC »

dang wrote: post #75
C06aka wrote: post #70

Earlier quoted context omitted.

No issues to discuss with the removal of my post, apparently. Not sure where the flamebait or name-calling were. You just didn't like my post. Own your bias.

"You're just biased" is the first retort of every troll. Actually my bias is closer to your view than to the opposite. That's not the issue here. The issue is that you're coming in with guns blazing, lashing out and firing condemnations at the side you have a problem with. Not only is this not helpful, it does violence to the thread. You're coming in to a room (let's call it) of human beings who have dealt with, and…

> The issue is that you're coming in with guns blazing, [...] it does violence to the thread.

It's frankly a bit weird that you think the claim that [we should eliminate people who we see as inferior] doesn't do this.

Re: At Home with Down Syndrome (2008)

#138

Post by bandana »

I didn't like the article. It cherry picks mild cases and appeals to sentiments to refute the "bleak statistics" ("the learning impairments and health problems, the strong possibility of heart surgery in the first few months of life, the reputedly high divorce rate of parents of a child with special needs"). It also makes it looks like a bad thing that we manage to detect and prevent 90% of the births.

Add to that the quote at the end about "every family should have a down syndrom kid" and all I can think is there"'s a strong case of misery loves company here.

Re: At Home with Down Syndrome (2008)

#139

Post by slothtrop »

C06aka wrote: post #71
lanfeust6 wrote: post #59

Earlier quoted context omitted.

It's not genocide by any definition. That would constitute eliminating an existing culture / ethnicity / society.

If eliminating greater than 90% of a group of people via genetic testing and systemic demonization isn't genocide, nothing is.

Mental deficiency does not make a culture or society. It's not sufficient to say they are a "group". It has to be a national, racial, religious, or ethnic group.

Famously, those with other ailments such as deafness or blindness have gone on to form their own subcultures. This of course never happened with the likes of Downs because they are not a "group" broadly and autonomously forming a culture. They are dependent on care, usually, and at the very least for a good portion of their lives.

You seem to think the risks of carrying a child knowing they will have Downs are irrelevant and ought to be borne by the parent. That's irresponsible and naive.

Re: At Home with Down Syndrome (2008)

#140

Post by [deleted] »

DanBC wrote: post #136
dang wrote: post #62

Earlier quoted context omitted.

There are deep issues to discuss here. Flamebait and name-calling destroy that possibility, so please don't post like this. https://news.ycombinator.com/newsguidelines.html

Dang, this is yet another example of you making a comment to someone who is responding angrily to a person saying abhorrent things. Your continued defence of polite but disgusting comments pushes out people with different backgrounds, and entrenches fascists who can maintain a polite veneer over their scientific racism or misogyny. It is unreasonable of you to say that people must remain calm no matter what the provo…

[deleted]
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