I have a friend who has a 501(c)(3) that makes really nice documentaries about people with Down syndrome, focusing on the positive influences they have on other people in their lives. They're on YouTube. Here's one I watched recently:
Unfortuna another documentary about people with Down Syndrome were more heartbreaking. A young girl got told from a doctor that not only shouldn't she get to try pregnant, the chance is very low already and that she has other medical concerns she needs to handle.
Not something she could handle without a proper care taker though.
Downs syndrome is indeed highly heterogeneous, one of the sadder aspects is the accelerated dementia specifically Alzheimer's.
I've known a few people with Dawn's syndrome and the striking often abrupt and rapid tragectory is shocking.
As much as the slow decline of dementia that it's often incidents months apart before things fall apart. Is sad.
So is it in people with Downs syndrome when at 35 their often bright and cheerful life loving demeanor seems to vanish over the course of a few months.
As I understand it it's because chromosome 21 carries the genes associated with Alzheimer's so they get an extra copy, but also structure issues with the brain, increased risk of sleep apnea and other toxic conditions.
"Not all car crashes are the same. People sometimes live because they weren't wearing a seatbelt."
The point of these statements is to make an outlier appear as if it is part of the norm. They're bad statements to make, because at heart they are just misleading.
To add a factoid without expressing an opinion: women with Down syndrome are often fertile while men typically are not. The odds of the offspring of a female with trisomy 21 having the same trisomy are 50% theoretically, and between 33-40% in practice due to trisomy embryos having a higher rate of spontaneous miscarriage.
He appears to have a rather mild form of down syndrome.
Now - Down Syndrome is typically called trisomy 21, that
is, you have three copies of chromosome 21 when normally
people have two copies of each chromosome, excluding XY
in regular males (2n = 46 in humans, the diploid
state; naturally females would have XX, whereas humans would normally have XY, unless there would be a genetic change leading to a different ploidy state here as well; normally those with Down Syndrome have regular XX or XY condition for that chromosome, only chromosome 21 has a +1 higher count). If you, however had, look at as many examples as
possible for people with Down Syndrome, you notice a huge
range of differences here. That is, some are affected by
the condition a LOT; others have an almost normal life,
compared to perhaps average to a bit below average "regular"
humans. I also noticed something similar for the progeria
disease. Now, progeria is much more problematic and severe
than Down syndrome; but there is a huge range of people
with different symptoms here. Adalia Rose had a severe
variant and did not survive past age 15, whereas Tiffany
Wedekind has a less severe variant (but also exercises a
lot and tries to keep healthy, despite already facing
significant health problems, at age 48 this year now).
So we see a huge pleiotropy of different genetic conditions.
In most cases exercises, activity and mental mood improves
things, but there are hard caps and limits. For instance,
Adalia could not have done as Tiffany did, simply due the
genetic status being different. It reminds me of the movie
Gattaca (now almost 30 years old) - it's a bit slow and a
bit over-drama, but has great actors and an even greater
take-home message aka "The Underdog who never gives up".
Good to have seen it at the least once, too.
It's absurd is being told you are different dismissively and not constructively. It's easy and convenient to dismiss people based on their needs, but true value lies in including everyone meeting them where they are.
> But because he has Down syndrome, someone told him he’s different.
Yes, and him being different (in a negative way) is a statement of fact. One shouldn't be going around shouting this into the faces of people with Down's, but we as a society have to stop pretending low IQ is something to be celebrated or disregarded in people.
Low intelligence as an attribute (not the unfortunate person saddled with it) ought to be universally stigmatised and we should be doing our best to eradicate it from the population. That certainly doesn't mean we should go out of our way to disrespect or dehumanise stupid people to their faces, but there has to be some sort of policy nuance in both treating them with respect while also calling a spade a spade and acknowledging that certain traits and conditions would be better off not existing in the population.
I don't know why people don't understand this, but something being true doesn't mean it can't also be hurtful, and it doesn't mean it has to be said. Gabe clearly already knows that he is different; there's absolutely no point in telling him this, other than to hurt him.
I look at it through my parenting lens. You can’t just ignore it. You have to prepare them for a harsh world where they will constantly hear it, feel it, and possibly worse. I’d feel my role would be to fully acknowledge it, overly embrace it, almost to a theatrical level. This would be privately in the home and while they’re young but the idea is to make them understand their difference has lots of benefits/positives to it. It’s kind of a super power. So they have a positive self image and relationship with their difference before they have to deal with the external stuff. Then, of course, they’ll still get upset when a name caller or bully confronts them but you can lean on the foundation of this is just who you are and who you are is awesome. It still hurts ofc but that’s inevitable in this world, how you respond is controllable. Someone simply vocalizing a fact shouldn’t ruin their day if they’ve been properly “coached” to have the fortitude.
There's a gulf of difference between burying/hiding truth and going out of your way to unnecessarily bring up a fact that serves no good purpose in context.
All of which to say, you can affirm it by being a dick, but that's not the only way to acknowledge the truth. Nor should we pretend the facts aren't there.
We are all different, and have different challenges in life to overcome. That’s life, as they say. You, for instance, have your prejudges to struggle with.
The question is how we all deal with these challenges, and how we meet people who are different from ourselves. I think it is important that we don’t put each other down, or judge based on our assumptions of what a person’s differences entails. Meeting people as individuals, and imagine other people complexly. And cheering on each other as we each overcome our challenges.
“We’re different, we’re the same” is a sesame street illustrated book that would clear things up quickly. Helped us explain the concept to our then 3 year old. Reinforcing the idea of celebrating the differences, we all have them, and not judging anyone else for theirs.
> Reading the room helps, which you seem pretty bad at.
If I ever start caring what random people like you think about a particular subject, let alone a subject about which I already have a strong opinion, I'll be sure to let you know, ramon156.
Every person has differences from every other people. Including monozygotic twins. Clearly what’s being referred to here is using “different” dismissively.
I'm not Downs but I have a personality disorder such that I've always felt different. I'm 60 now and yet to meet anyone, M or F, who seems remotely like me. I was married, didn't end well, and have a daughter who doesn't talk to me. I live every day bathed in the knowledge that I am utterly alone in the world, despite having 2 close female friends. It has always been this way. It will always be this way. I try to live a quiet secluded life.
(I'm guessing "no" but a lot of recognized conditions have huge variance in individuals, so having a recognized personality disorder also isn't a guarantee that there will be others with a similar mindset...)
More importantly, I wish you peace and happiness. It's a difficult hand to be dealt...
Many individuals also have more than one personality disorder. I have a partner with bipolar + borderline + OCPD and a bunch of other stuff. I have a fair few too (borderline and OCPD at least).
Based on a hunch, GP may potentially find similar minds on 4chan
I was lucky enough to know that all I need is presence in my life. I don't really care for interaction or romance.
Remember that having children, getting married, living a fulfilling life is just the status quo and not the path your life has take. Be or do whatever makes you happy as long as you're not harming others.
Might be a bit late, but it's all about the ride and leaving something behind for others to enjoy is a nice extra.
Well - many people with a personality disorder don't even have kids, so perhaps you did something better than these; or, different, if better does not serve here.
I would not want to give any advice to anyone about their own personal lives, but surely the story you show here must be incomplete. Unless your daughter never spoke to you to begin with.
Even for people without any disorder, communication is not always trivial - some find it easy, others find it hard. For me it is hugely difficult to do small-talk and fake-talk. My brain does not work like that. Whereas if something is interesting, I can talk and listen easily.
> a word for a person with a learning disability (= a condition that can have an effect on someone's ability to learn easily), which was used by doctors in the past but is now extremely offensive
Yes, in that context it's offensive, I agree. But when people use that as a slur with something without a learning disability they aren't literally talking about or referring to a learning disability so it's a different context
https://www.youtube.com/watch?v=9dCzejMK9jU
This is the non-profit:
https://www.storiesmadewithlove.com
Unfortuna another documentary about people with Down Syndrome were more heartbreaking. A young girl got told from a doctor that not only shouldn't she get to try pregnant, the chance is very low already and that she has other medical concerns she needs to handle.
Not something she could handle without a proper care taker though.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3707311/
Having said that, men with Down syndrome are generally infertile anyway.
I've known a few people with Dawn's syndrome and the striking often abrupt and rapid tragectory is shocking.
As much as the slow decline of dementia that it's often incidents months apart before things fall apart. Is sad.
So is it in people with Downs syndrome when at 35 their often bright and cheerful life loving demeanor seems to vanish over the course of a few months.
As I understand it it's because chromosome 21 carries the genes associated with Alzheimer's so they get an extra copy, but also structure issues with the brain, increased risk of sleep apnea and other toxic conditions.
The point of these statements is to make an outlier appear as if it is part of the norm. They're bad statements to make, because at heart they are just misleading.
(Not to say that anything you say is incorrect).
Now - Down Syndrome is typically called trisomy 21, that is, you have three copies of chromosome 21 when normally people have two copies of each chromosome, excluding XY in regular males (2n = 46 in humans, the diploid state; naturally females would have XX, whereas humans would normally have XY, unless there would be a genetic change leading to a different ploidy state here as well; normally those with Down Syndrome have regular XX or XY condition for that chromosome, only chromosome 21 has a +1 higher count). If you, however had, look at as many examples as possible for people with Down Syndrome, you notice a huge range of differences here. That is, some are affected by the condition a LOT; others have an almost normal life, compared to perhaps average to a bit below average "regular" humans. I also noticed something similar for the progeria disease. Now, progeria is much more problematic and severe than Down syndrome; but there is a huge range of people with different symptoms here. Adalia Rose had a severe variant and did not survive past age 15, whereas Tiffany Wedekind has a less severe variant (but also exercises a lot and tries to keep healthy, despite already facing significant health problems, at age 48 this year now).
So we see a huge pleiotropy of different genetic conditions. In most cases exercises, activity and mental mood improves things, but there are hard caps and limits. For instance, Adalia could not have done as Tiffany did, simply due the genetic status being different. It reminds me of the movie Gattaca (now almost 30 years old) - it's a bit slow and a bit over-drama, but has great actors and an even greater take-home message aka "The Underdog who never gives up". Good to have seen it at the least once, too.
Down Syndrome is a quite serious genetic abnormality, pretending it's not with silly statements like "someone told him he's different" is absurd.
Yes, and him being different (in a negative way) is a statement of fact. One shouldn't be going around shouting this into the faces of people with Down's, but we as a society have to stop pretending low IQ is something to be celebrated or disregarded in people.
Low intelligence as an attribute (not the unfortunate person saddled with it) ought to be universally stigmatised and we should be doing our best to eradicate it from the population. That certainly doesn't mean we should go out of our way to disrespect or dehumanise stupid people to their faces, but there has to be some sort of policy nuance in both treating them with respect while also calling a spade a spade and acknowledging that certain traits and conditions would be better off not existing in the population.
All of which to say, you can affirm it by being a dick, but that's not the only way to acknowledge the truth. Nor should we pretend the facts aren't there.
The question is how we all deal with these challenges, and how we meet people who are different from ourselves. I think it is important that we don’t put each other down, or judge based on our assumptions of what a person’s differences entails. Meeting people as individuals, and imagine other people complexly. And cheering on each other as we each overcome our challenges.
Something can be true, and you don't need to point that out
If I ever start caring what random people like you think about a particular subject, let alone a subject about which I already have a strong opinion, I'll be sure to let you know, ramon156.
(I'm guessing "no" but a lot of recognized conditions have huge variance in individuals, so having a recognized personality disorder also isn't a guarantee that there will be others with a similar mindset...)
More importantly, I wish you peace and happiness. It's a difficult hand to be dealt...
Based on a hunch, GP may potentially find similar minds on 4chan
visit new york city's lower east side
everyone here is different :)
Remember that having children, getting married, living a fulfilling life is just the status quo and not the path your life has take. Be or do whatever makes you happy as long as you're not harming others.
Might be a bit late, but it's all about the ride and leaving something behind for others to enjoy is a nice extra.
I would not want to give any advice to anyone about their own personal lives, but surely the story you show here must be incomplete. Unless your daughter never spoke to you to begin with.
Even for people without any disorder, communication is not always trivial - some find it easy, others find it hard. For me it is hugely difficult to do small-talk and fake-talk. My brain does not work like that. Whereas if something is interesting, I can talk and listen easily.
I wish you well and hope you find your Tan Elbrun.
Yes, in that context it's offensive, I agree. But when people use that as a slur with something without a learning disability they aren't literally talking about or referring to a learning disability so it's a different context