21–30 of 155 posts
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…
This may be related to the recent controversy over RMS at the FSF foundation: https://rms-open-letter.github.io/appendix.html In 2015 and 2016 RMS made three posts on his website about Down’s syndrome. - He recommended that, should someone find out they are pregnant and the child tests positive for Down’s syndrome “the right course of action for the woman is to terminate the pregnancy.” - He referred to people decidi…
RMS lacks the self censorship and political intuition to not say what many think but know not to say. I disagree with him that " having a child with Down’s syndrome to having a pet." but that's because I've had experience with a neighbor with down syndrome. However, I know many people think that, they just are politically savvy enough not to say it. It's unfortunate that in today's society, people condemn people like…
A nurse gave us a copy of "Welcome to Holland" not too long after we had gotten the diagnosis. It was a beautiful explanation as to why life is going to be different than we expected, the same destination, just a different path. It wasn't until a few weeks later that we realised the author's name is Emily Pearl Kingsley, which is oddly coincidental as my name is Kingsley. Weird.
https://www.emilyperlkingsley.com/welcome-to-holland
This is an interesting time to read this, thanks for sharing. My wife and I just brought our 6 month old daughter home from the ICU after spending all but 2 weeks of her life there.
Our lil baby has Kabuki syndrome, it’s extremely rare, but has similar attributes to Downs. Kabuki can and has affected multiple organ systems with our girl, she has very complex heart disease, a pelvic kidney, hypotonia, hip dysplasia, malrotation, right isomerism, asplenia, immunodeficiency, endocrine issues, severe hearing loss etc, etc.
It was a hard pill to swallow that I am a dad to a special needs child now. Kabuki kids have varying levels of mental and physical disability, but we were told she will likely be generally happy, which is all mom and I really care about. We’re at peace with everything now, and are just extra loving on the small things (like her smiling!)
I do plan on blogging about being a dad to a medical 1%-er, tips/tricks, especially as I am originally from England and now live in the US, if anyone is interested.
https://kingsley.sh/posts/2021/staggering-cost-of-surviving-...
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…
I agree that that stat is unsettling, but I really can’t judge the people making this choice. It’s an impossibly hard situation to be put in, and you can’t be judgmental. Decisions like these are never easy, and never taken lightly by anyone.
I think though, as the article points out, doctors have a responsibility to properly educate about the life quality of down syndrome so parents can make an informed choice. Right now, standard medical practice seems to be to just recommend abortion without much information.
This may be related to the recent controversy over RMS at the FSF foundation: https://rms-open-letter.github.io/appendix.html In 2015 and 2016 RMS made three posts on his website about Down’s syndrome. - He recommended that, should someone find out they are pregnant and the child tests positive for Down’s syndrome “the right course of action for the woman is to terminate the pregnancy.” - He referred to people decidi…
But killing the unborn is a-ok because they would "suffer", and the worst of all, they would be a burden on the parents who would not be able to continue their hedonistic lifestyles, they should be consuming stuff all the time, for the good of society! Now that is good and desirable.
Sick world
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…
Just curious could you give examples of them being witty?
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.
This may be related to the recent controversy over RMS at the FSF foundation: https://rms-open-letter.github.io/appendix.html In 2015 and 2016 RMS made three posts on his website about Down’s syndrome. - He recommended that, should someone find out they are pregnant and the child tests positive for Down’s syndrome “the right course of action for the woman is to terminate the pregnancy.” - He referred to people decidi…
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…
So can people that don't have Down Syndrome.