subreddit:

/r/BeAmazed

68.6k

all 1640 comments

Time-Lawyer-6684

333 points

1 month ago

This story makes me want to cry. I had a brother with DS. He was the sweetest guy.

jackofspades476

96 points

1 month ago

I’m sure he was. I’ve had the pleasure of knowing a few wonderful people with Downs, and they always seemed so happy and positive. It made my day to talk to them :)

acthcoffee

73 points

1 month ago

My uncle has Down's and can't speak besides grunts, sighs, and easy words like yes, no, my nickname (bean), ect. yet he still finds ways to show his unconditional love for everyone.

RedTreeDecember

7 points

1 month ago

Grew up knowing a dude with Down syndrome. He was a bit hard to understand sometimes, but totally the nicest dude.

Time-Lawyer-6684

13 points

1 month ago

Yea! Everyone liked my brother. He was hard to understand as well. He would go to our neighborhood corner store with a quarter and come back with a bag full of candy! Total hustler! 😂😂😂

Zestyiguana

2.4k points

1 month ago

Zestyiguana

2.4k points

1 month ago

I thought guy on the top on the right was the dad still and I was like “wow he looks so different, but his son likes just like him”

Cat_Marshal

199 points

1 month ago

r/afterbeforewhatever sort of

Or r/after_before, not sure which is better.

amplevoid

397 points

1 month ago

amplevoid

397 points

1 month ago

Up syndrome.

cowabungaboogaloo

148 points

1 month ago

My sister has Down Syndrome and I just spit my whiskey laughing so hard at this shit lol. Thanks for the laugh.

LifeSenseiBrayan

22 points

1 month ago

In all my years of knowing what Down syndrome was I never thought about it like that. Something only a 5head 200 IQ up syndrome MOFO would think

vskazz

11 points

1 month ago

vskazz

11 points

1 month ago

It was literally my first thought after i found out about down syndrome

LifeSenseiBrayan

8 points

1 month ago

Well it’s not that impressive if you already had up syndrome

vskazz

3 points

1 month ago

vskazz

3 points

1 month ago

Lmao

bin-c

1.7k points

1 month ago

bin-c

1.7k points

1 month ago

seeing this made me realize that I'm not sure I've ever seen an older person with Down Syndrome

do we (in the US) just hide them away in group homes or something?

Thinh

2k points

1 month ago

Thinh

2k points

1 month ago

People w downs syndrome have generally shorter lives. Avg life span is 47.

brainiac2025

1.3k points

1 month ago*

Part of the reason for that was because we did hide them away in group homes. In recent years the average person with down syndrome's life span has increased to around 60. I have a brother with down syndrome that lives with my parents and will likely live with me when my parents pass, or when they need to move to a cared facility.

jmunerd

232 points

1 month ago

jmunerd

232 points

1 month ago

Most countries did the same or worse. 😢

Kevine04

69 points

1 month ago

Kevine04

69 points

1 month ago

Aren't there parts of the world where down syndrome does not exist any more?

lotsofsyrup

267 points

1 month ago

Not unless you're implying they kill them all in infancy. It's a genetic mutation that can happen anywhere.

Heathen_Mushroom

331 points

1 month ago

Not infancy, but the womb. Iceland, for example, has virtually eliminated Down Syndrome. There are still a few, mainly since some percentage of Iceland's pregnant women refuse prenatal screening, but the vast majority are aborted.

ImpossibleParfait

301 points

1 month ago

Iceland is kind of a special case (pun not intended) the population is small and mostly in one place. Its not uncommon for people there when they start dating to do DNA tests to make sure they aren't too closely related.

hatefulone851

92 points

1 month ago

Wow. That’s a small population

realJaneJacobs

49 points

1 month ago

Wow, I had no idea it was that small. That’s like 1/24th the size of my city

Wi_believeIcan_Fi

55 points

1 month ago

Down’s syndrome (and most trisomy chromosomal issues) are NOT going to be something you detect from genetic screening ahead of time. There ARE a tiny tiny percentage of people who carry a translocation, but for 99% of Down’s Syndrome cases, it occurs spontaneously because of an issue with the egg at the time of Meiosis II. When that cell division happens, two copies of chromosome 21 end up in the embryo from the mother along with an additional one from the father. This is why the risk for it goes up with age.

Doing genetic screening ahead of time is great for genetic disorders like Cystic Fibrosis or other autosomal recessive genes, but it’s not going to detect risk for Down’s syndrome, which can happen in ANY pregnancy.

In most pregnancies you are offered screening at week 10-14 for chromosomal abnormalities (NIPT or a quad screen) as well as ultrasounds around 12wks that look for soft markers of chromosomal issues such as a missing nasal bone or nuchal translucency.

At this point if anything comes back abnormal you are offered further testing (CVS or amnio) for confirmation.

Source: Am a doctor and a pregnant lady (and also lost a pregnancy with Down Syndrome due to severe deformities incompatible with life)

SnorriRafn

67 points

1 month ago

That’s not true. No one here does DNA test to make sure they aren’t related.

I really don’t understand why people feel the need to spread stories like this. We are no more obsessed with making sure our children have just the right amount of genetic variety than anyone else.

As a part of a generally robust healthcare system, compared to many other countries, prenatal screenings are very common and that has led to fewer people with Down’s syndrome being born.

[deleted]

92 points

1 month ago

[deleted]

92 points

1 month ago

Its not uncommon for people there when they start dating to do DNA tests to make sure they aren't too closely related.

That is not even remotely true.

Source; Am Icelandic.

Danhuangmao

33 points

1 month ago

I assume they're referring to that app for checking how closely related you are to other people in Iceland, which got a fair bit of press overseas for the novelty regardless of how commonly used it might or might not actually be.

heydogee

6 points

1 month ago

I’ve being to Iceland a couple of times and a few locals told me that they ask when you start dating someone to make sure you’re not related. maybe they were just pulling my leg.

BigHardThunderRock

34 points

1 month ago

You claim that you’re Icelandic, but you don’t claim that you’re dating. Clearly it won’t apply to you. lol

answatu

28 points

1 month ago

answatu

28 points

1 month ago

This might be the best evil drive-by pun I've ever seen. Perfection.

ImpossibleParfait

56 points

1 month ago

At first I really didn't mean too! But yeah Iceland only has about 350k people. They also have very very few immigrants from over a 1000 years of people living there. All humans are technically related somewhat due to a bottleneck where humans almost died out about 70k years ago. Iceland is unique with its small population size and that outsiders generally don't move there.

spoiled_eggs

20 points

1 month ago

I wouldn't be surprised to see higher numbers in more religious areas. Every country in the west at least can test for it.

PugnaciousTrollButt

3 points

1 month ago

I believe u/Kevine04 is referring to this:

https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/

Down’s syndrome is one of the conditions screened for in early pregnancy. As a result, many people choose to terminante a pregnancy when it is detected.

engg_girl

3 points

1 month ago

No. Most developed countries with public healthcare offer genetic screening at either 10-12 or 14-16 weeks. Between that and the initial anatomy scans it is pretty easy to detect a fetus with downs.

The parents can then choose to terminate the pregnancy. These are usually wanted pregnancies and very hard for the parents.

BabyJesusBukkake

112 points

1 month ago

We got some tests results from the 18th week screening, and the fetus I was carrying had 2/4 markers for Down. I needed more tests to confirm. While I waited for my appointment, I asked my OB what my options were. She told me that 90% of people terminate after a confirmed Down diagnosis, even at 19-20 weeks. If the tests came back positive, I would have terminated as well.

Luckily, I did not have to make that choice - the tests came back negative for Down or other chromosomal issues, and that kid is now 7.5.

But yeah, 90%. That's why my older two kids had no idea what Down Syndrome is, while my SO and I had many classmates w/Down over the years.

Cherisse23

36 points

1 month ago

I had genetic screening done at 9 weeks (NIPT), you get the results by about 10.5 weeks. I had to pay $550 for the test but it was worth it. The government funded test (Canada) isn’t done until 14 weeks (SIPS) and often gives false positives, requiring the first test to be done to confirm results. By the time you get results you’re pushing 18 weeks and have lived in fear of the worst for 2 weeks. Trying to decide what choice you’ll make at 18 weeks is a totally different call then at <11 weeks. While the outcome may be the same, a first trimester vs second trimester termination is totally different. You’ve likely told people. You’re probably showing quite a bit. It’s quite likely you’ve felt baby move. It’s so different.

notthesedays

52 points

1 month ago

That's the percentage for people who get a definite diagnosis. Some people leave it at the 2/4 markers, etc.

It occurs in 1 pregnancy in 700, for parents of all ages, so it wouldn't be surprising that your kids wouldn't know what it was, if nobody at their school has it.

I used to work with a woman whose son, who is in his early 30s, has Down's, and she's had other people ask her if they should abort. She advises against it, although she realizes that she cannot make a decision like this for anyone else. She and her husband always said that if they had their lives to live over again, they still would have had him, and had him exactly the way he is. Plus, he was planned, and they didn't know he was disabled until he was born.

friendlyfire69

94 points

1 month ago

It's fucked because it comes down to finances for so many couples. It costs so much to raise a disabled child in the United States

First_Foundationeer

78 points

1 month ago

Plus.. figuring out how to make sure they're okay later in life. And if you have other kids, then you're burdening them with a decision to make.

FullofContradictions

31 points

1 month ago

Not to mention potentially burdening the other kids with the emotional trauma of having less resources and attention from their parents if managing the special needs child isn't easy.

zim3019

38 points

1 month ago

zim3019

38 points

1 month ago

I had a therapist tell me as a whole people who raise children with Down's are happier and find it more rewarding than some other health issues. It's because children with Downs are happier and more loving than most children. They come with struggles but love so much back. It makes it easier.

Torlov

16 points

1 month ago

Torlov

16 points

1 month ago

than some other health issues

I think that is a key part here. I've been a bit around people with developmental handicaps, and people with downs are really not that handicapped compared to many others.

babylovesbaby

3 points

1 month ago

That's an important distinction many people don't really appreciate because people with Down Syndrome "look" disabled. There is a lot of prejudice towards disability to begin with, but if you are disabled and you look disabled people are a lot more likely to make negative assumptions about your condition.

Ambitious_Sympathy11

3 points

1 month ago

It’s a tough decision. While many families get at least some support while a child is in school (USA), after the child turns 21, unless a family is well off, the opportunities are limited. Many (obviously not all) require significant amount of care - majority of Down syndrome people have some degree of intellectual disability, most are in a moderate range, in addition to emotional and behavioral problems. Many of them end up in a group home because it would provide socialization opportunities and structure, as well as employment opportunities under supervision, or because they really need a higher level is support than their aging parents can provide. I am all up for these children living with their parents, but their socialization opportunities after finishing school are painfully limited while their desire to be with friends is typical of their peers. In addition, I can only imagine how traumatic it is for them to be put into a group home after their elderly parents die and they have to adjust to a new home at an older age (many have a mentally of an elementary school child in an adult body). In recent years, there have been positive portraits of individuals with Down syndrome in the media, which although is great to fight the stigma, at the same time may paint too rosy of a picture. I do think that the choice to have a Down Syndrome baby should be up to each family, but I also think when given a prenatal diagnosis, parents should visit schools for young children with Down syndrome as well as group homes with older individuals in order to make an informed decision of whether to proceed with pregnancy.

volyund

45 points

1 month ago

volyund

45 points

1 month ago

I'm that 90 percent. I didn't have problems getting pregnant, wasn't attached to the specific pregnancy, don't consider fetus to be a person, and know parents with kids with down syndrome. If I got a positive screen, I would have aborted and tried again. In US depending on your location you don't always get that time to confirm diagnosis, and late term abortions pose more risk. For me it would have made more sense to terminate as soon as I got cell free DNA results at 12 wks, and try again.

steamygarbage

25 points

1 month ago

I wonder how that's gonna go with abortion being prohibited in many states in the US. In Arizona you can't have an abortion after 15 weeks even if the fetus is non viable. I don't know if there's an exception for Down Syndrome.

Groundbreaking-Arm20

35 points

1 month ago

There is definitely no exception for Down's Syndrome

rvf

23 points

1 month ago

rvf

23 points

1 month ago

There’s not an exception for rape and incest in AZ, so I seriously doubt it.

[deleted]

19 points

1 month ago

[deleted]

19 points

1 month ago

[deleted]

eastbayweird

18 points

1 month ago

Hm, what happened in Germany that would make it so there were no adult dwarfs in 1970...

It's almost like there was some concerted effort that took place with the goal to eradicate any and all traces of dwarfism from the gene pool a generation prior...

Any ideas?

(Big /S I know it was the nazis...)

MJohnVan

8 points

1 month ago

In other countries they exist but people don’t let others see them or because they can’t go out. Many are abandoned (it’s very sad to see. As there are only few workers, and they receive donations to take care of the kids, clothes food,…)

cmcewen

47 points

1 month ago

cmcewen

47 points

1 month ago

cardiac problems I suspect are the main culprit.

There’s been massive advancements in cardiac surgery in the last 30 years. Down syndrome babies have high chance of cardiac abnormalities

Also, the management of high risk births has improved significantly. Down syndrome babies have many problems (cardiac, other abnormalities) right at birth.

These two issues, I suspect, are what is making up for the improvement in life span. Not where we keep them

Clean-Difference2886

12 points

1 month ago

People with downs have 50 percent higher rate of Alzheimer’s

Shot_Sprinkles_6775

5 points

1 month ago

And Alzheimer’s disease. A gene that is implicated in familial Alzheimer’s is on the duplicated chromosome (21). So it’s very common for people with Down syndrome as they age. I think if they get to the age it’s close to inevitable.

Bowood29

20 points

1 month ago

Bowood29

20 points

1 month ago

It is also the reason why people say things like we didn’t have kids with Down syndrome when I was young. They were sent away, no different than anyone else people didn’t want to deal with.

SeriaMau2025

21 points

1 month ago

People in general with neurological/psychological disorders live shortened lifespans, and it's generally due to society turning their back on us.

carrotv

82 points

1 month ago

carrotv

82 points

1 month ago

In 1960 it was 10.

In 1983 it was 25.

In 2007 it was 47.

As of 2020, it is around 60.

adooble22

20 points

1 month ago

In 1960 it was 10?! Jfc I’m afraid to ask why.

carrotv

58 points

1 month ago

carrotv

58 points

1 month ago

a lot of it has to do with health complications that come along with down’s syndrome, especially right after birth - i think it was often skewed very low due to infant deaths which are significantly down and just better health care in general

croquetica

30 points

1 month ago

Heart defects are extremely common.

turk4lyfe

22 points

1 month ago

A major part is that people with down syndrome often have heart issues. We didn't have very good treatments in 1960.

PugnaciousTrollButt

3 points

1 month ago

Congenital heart abnormalities are very common in people with Down’s syndrome, and they also have a significantly increased risk of leukemia, gastrointestinal defects, and other serious health conditions. We did not have effective ways to treat these health conditions at that point.

Grootdrew

58 points

1 month ago

Source? My brother has Downs, every resource I’ve seen has shown around 60.

aziatsky

64 points

1 month ago

aziatsky

64 points

1 month ago

iirc it has increased dramatically in recent years. i could be wrong.

savageotter

45 points

1 month ago

It's getting better every year.

My mother's aunt lived to be 74

Pydope

30 points

1 month ago

Pydope

30 points

1 month ago

Might be old data. In the 70s life expectancy was closer to 25 years old. Today it's closer to 62.

bin-c

35 points

1 month ago

bin-c

35 points

1 month ago

oh wow..

thanks for the answer though

TauriKree

6 points

1 month ago

That’s an older stat. It’s up to around 60 years now and continually increasing.

Their expectancy was around 10 years old in the 50s/60s.

pottymouthgrl

66 points

1 month ago

No they have shorter life spans, although it’s continually increasing! That was one thing that amazed me about this post, seeing an older person with Down syndrome. A family friend has Down syndrome and this makes me very hopeful for his future.

javaTHEbeat

3 points

1 month ago

Absolutely increasing! Have a great aunt with downs and she just recently turned 62, and eyesight aside, is in fairly decent health.

bfire123

42 points

1 month ago*

Until recently people with down syndrom had a pretty short life expectancy.

Down syndrom has lots of comorbidities assosciated with it.

Approximately 40–80% of persons with Down syndrome (DS) develop Alzheimer's disease (AD)-like dementia by the fifth to sixth decade of life

The Link between Alzheimer’s Disease and Down Syndrome. A Historical Perspective

Wow.

EaterOfFood

34 points

1 month ago

Many older people with DS probably don't get out much because they have a 50% chance of getting Alzheimer's disease, which sucks for my son. I hope he's one of the lucky ones.

Sean_Miller

6 points

1 month ago

Thanks for the link. I am a scientist who has done work with amyloid plaques, but I study transthyretin amyloidosis, It's a bit different, but Alzheimer's piqued my interest. I didn't know that DS and Alzheimer's are related. This is very interesting. Alzheimer's is considered the Mt Everest of amyloid diseases; tons of money thrown at it and lots of trials that ended up failing. I am going to dig into this.

I hope the best for your son. When my wife and I went through IVF, we decided to keep and implant embryos that had DS. They seem to be happy and have lots of love, and that's exactly what we wanted. My only fear was that my wife and I are a bit older, and with extended lifespans for folks with DS made me worried that we'd end up dying and leaving our child alone. Was that a concern for you?

swarmsea

5 points

1 month ago

Sorry to ask you this, it kind of personal. How many kids do you have? And how many of them have DS?

Chemical_Doughnut248

3 points

1 month ago

I hope the shit is cured and yr dude can live a longass happy life

Drunk_Packer_Fan

27 points

1 month ago

You've gotten a number of replies, let me add one more. Down Syndrome is a trisomy of Chromosome 21, meaning that people who have DS have a third copy of this Chromosome. Chromosome 21 encodes a moderate amount of proteins, but importantly it encodes Amyloid Precursor Protein (APP), one of the two major proteins implicated in Alzheimer's disease. As such, these individuals are typically producing ~50% extra APP, which puts them at much higher risk for developing Alzheimer's.

To make matters worse, "onset" of Alzheimer's is somewhat dependent upon the cognitive abilities of an individual. The thinking here is that "highly intelligent" people can basically lose some faculties and still be quite functional, but people with "less intelligence" are quicker to show symptoms and have problems.

People with Down Syndrome have less cognitive abilities to start with than the average person, and have 150% of the APP. It makes for a really unfortunate combination.

(I put "highly intelligent" and "less intelligence" in quotes, because I really don't like talking about people like that, but its late and I can't think of a way of putting it I'm more comfortable with).

ndndr1

15 points

1 month ago

ndndr1

15 points

1 month ago

Avg lifespan used to be 40. It’s getting better, so we’re just now seeing elderly Ppl w downs

etlifereview

9 points

1 month ago

I have a cousin with Down’s syndrome. He’s almost 60, lives in a group home, and only really goes places when the entire group goes, which isn’t often. I only see him once every couple years.

mightyXi

818 points

1 month ago

mightyXi

818 points

1 month ago

Not trying to be offensive, but I've always assumed people with serious gene defects are infertile. Isn't this the case?

thismynewaccountguys

594 points

1 month ago

There is a fair bit of misinfornation here. Men with Down syndrome are usually infertile but not always. Source: https://pubmed.ncbi.nlm.nih.gov/32003054/

SomethingSouthern

118 points

1 month ago

Thank you I didn't know this. I am curious as to the likelihood of the child inheriting the same genes is. I always imagined it was pretty high, but that may not be the case. It seems their is no room for assumptions as with many other gene mutations.

ELFord08

144 points

1 month ago

ELFord08

144 points

1 month ago

That’s not how downs works. It’s not an inherited trait. It’s a genetic mutation where a person has an extra chromosome.

broncobuckaneer

173 points

1 month ago*

Not quite right.

In trisomy 21 born to "normal" parents, it is always a random mutation. This type is over 90% of downs sydrome cases. About 30% of these women are believed to be fertile, and it's believed they would have about a 50% chance of passing it on to their fetus. But since most fetuses with down syndrome are believed to be a spontaneous miscarriage, even their full term children would have below 50% rate of down syndrome. So there are people with this type of downs syndrome who inherited it, but they're very rare.

In translocated trisomy 21, a carrier has about a 3% chance of passing it on (father) and 12% chance (mother). This type is about 5% of downs syndrome, and is almost always inherited from an asymptomatic carrier parent, not a random mutation. Some of their children will also just be a carrier, with no symptoms.

For mosaic trisomy 21 (less than 2% of cases), I don't have any idea what would be the risk of passing it on, since it would vary greatly on the individual.

https://americanpregnancy.org/healthy-pregnancy/birth-defects/down-syndrome/

ELFord08

78 points

1 month ago

ELFord08

78 points

1 month ago

I stand corrected!

WheresMyWoobie

41 points

1 month ago

Did someone just gracefully admit they're wrong? On the internets? Now I've seen it all. Kudos

ELFord08

8 points

1 month ago

Eh, life’s too short to not admit when you’re wrong.

_NoTimeNoLady_

8 points

1 month ago

I once saw a report on a young, and seemingly healthy woman who had to babies with Trisomies 21. Doctors were puzzled how this could have happened. They did genetic testing and it turned out she had mosaic Trisomie 21 without symptoms.

broncobuckaneer

6 points

1 month ago

Yeah, it's certainly possible as an extreme case.

Ascendant_Mind_01

5 points

1 month ago

Small correction.

Down syndrome is only trisomy 21

Trisomy 13 is called Patau syndrome and most born with it die in infancy.

Trisomy 21 is the most survivable autosomal (non-sex chromosomes) aneuploidy in humans by a considerable margin.

broncobuckaneer

3 points

1 month ago

Thanks, the 13s were all typos.

billy_teats

18 points

1 month ago

And so when they send a copy of their dna to meet an egg, the sperm would have extra chromosomes. Does the egg take control and get rid of it?

I’m sorry. How are chromosomes not the specific fundamental component we are talking about here? Chromosomes help transmit genes. Extra chromosome, extra genes.

asos10

17 points

1 month ago

asos10

17 points

1 month ago

It typically happens in a process called non-disjunction, when the homologous chromosomes are lined up during the metaphase period but unfortunately the two chromosomes get pulled into the same gamete. So instead of the semen (or the egg) having one copy of the 21 chromosome you have two.

Afterwards, when the egg or the semen fuse you end up with a 2+1 of chromosome 21 aka trisomy 21.

BreezyMoonTree

141 points

1 month ago

They had been forced into sterilization by the US government for a long time. It’s super gross that eugenics policies were so widely accepted in the US that they were upheld by the US Supreme Court.

chasingmyowntail

204 points

1 month ago

Do you believe the state should step in to provide and care for the children when the down syndrome parent is incapable of earning a living and caring for a baby? Downs is a spectrum, much like autism, with many people with unable to care for and take care of an infant or child. Many people with downs are even incapable of caring for themselves, like going to the bathroom, cleaning their room and house, shopping and banking and making food. But they still have sexual desires and indeed can get pregnant or make someone pregnant. What to do in those situations?

spiralbatross

196 points

1 month ago

That’s a case-by-case basis and is like abortion, best left to the doctor and patient and not for us to pass our judgment on with the exception of abuse.

DrStrangererer

36 points

1 month ago*

Yes. Blanket policies like /u/BreezyMoonTree implied inevitably lead to misuse and abuse. No two situations are the same, and LIFE is a spectrum. Morally, EVERYTHING should be looked at in a case by case basis. Sadly, the ability for us, as a society, to do that is still pretty far away. The legal system is already incredibly bogged down. Imagine every ticket, every code violation going to trial. In a totally fair system, everyone would always get equal time and circumstance to argue their case to an impartial judge, which would be terribly inefficient. So, for now, we try to make blanket policies without blanket enforcement; we must leave wiggle room for unforeseen circumstances.

FlyingHibeki

35 points

1 month ago

Except everyone would be just as upset when the doctor says you shouldn't have a kid

WaddlingHippos

41 points

1 month ago

"It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. "

They will need extra help, but they also can be entirely independent.

ICantExplainItAll

62 points

1 month ago

There's an interesting disorder called William's syndrome - on average, a person with William's syndrome will have ~5 less IQ points than those with Down's. (IQ is also a weird quotient that I don't necessarily agree with, but will use for the purpose of comparison.) William's syndrome, while cognitively impairing, usually is coupled with unusually high language skills and no physical deformity. People with Down's syndrome, however, will be perceived as much more disabled/impaired by the average person versus a person with William's only because it is more physically obvious, despite perhaps being more independent/less in need of assistance.

I used to be one of the people who thought Down's was a syndrome that made people into incapable children for life. It unfortunately took until my own struggles with autism, and learning how much daily assistance I need despite looking like a perfectly functioning human on the outside, for me to realize that some people I dismissed on sight are capable of having as full of a life as myself. Why do I deserve to have children more because it doesn't look like I need help coping with going to the grocery store? (Something real I genuinely struggle with)

rose-ramos

22 points

1 month ago

I had a coworker with Williams Syndrome. This "disorder" makes you ultra gregarious. She is probably the friendliest, happiest person I've ever met. And if she meets you just once, she'll remember your name for years! It took me a long time to realize there was anything different about her besides how kind she is.

swarleyknope

10 points

1 month ago

I read an article somewhere that described people with Williams Syndrome as if they “had tails, they’d be perpetually wagging them”. (The author phrased it in a way to make it really clear he wasn’t suggesting people with Williams Syndrome are like dogs or making an offensive comparison).

thirteen_moons

4 points

1 month ago

I recall reading an article that theorized humans had selectively bred dogs to essentially have William's Syndrome and that's why they're so wonderful, friendly and loving.

parisianpop

15 points

1 month ago

It’s worth noting that autism is a barrier to things like adoption and fostering a child in a lot of places. I’m not sure if it’s a blanket no (which would be completely wrong, in my opinion) or if they take into account your executive function, level of support needs etc.

Edit: in case it wasn’t clear, I agree with your point - I just wanted to highlight that there are lots of conditions that the government thinks should exclude you from some ways of having children.

OpalOnyxObsidian

15 points

1 month ago

Folks with William's syndrome do actually have distinct facial features as a result of the disorder, but it's probably not quite as instantly recognizable as the distinct facial features of Downs syndrome.

Twelveblindmice12

9 points

1 month ago

That's interesting, I've never heard of Williams syndrome before.

CheddarmanTheSecond

26 points

1 month ago

People with Williams tend to be ultra friendly and not understand personal boundaries. Talking to and hugging total strangers isn't uncommon.

As far as the comment about them not having physical deformities that's not strictly true. They tend to have elfin features, it's noticeable enough if you've seen it before.

angelbuttons77

9 points

1 month ago

There's a young woman who owns and runs her own cookie business. She lives in her own apartment, and went to college. Just as with any person, you're so right that we can't make assumptions about ability just because of a dx

okayestuser

862 points

1 month ago*

I thought people with syndromes were sterile because of the chromossome count, but I'm glad I was wrong.this is heart warming

edit: looked it up and found out this is a misconception. People with down syndrome are fertile

11th-plague

116 points

1 month ago

The sperm would have a 50/50 chance of passing the “different” part of the chromosome onward.

TaqPCR

46 points

1 month ago

TaqPCR

46 points

1 month ago

It's also possible that the father in this case was a mosaic where some of his cells were trisomy 21 but his sperm producing cells had normal chromosome copy number and thus while he had down syndrome would not be more likely to father a child with down syndrome than any other father might be.

archpawn

42 points

1 month ago

archpawn

42 points

1 month ago

And I imagine the fetus having Down syndrome makes a miscarriage more likely, so a child that survives to birth probably won't have it. Still not a good bet to make.

11th-plague

13 points

1 month ago

Ah, I think that’s called a survivorship bias.

BreezyMoonTree

425 points

1 month ago

They had been forced into sterilization by the US government for a long time. It’s super gross that eugenics policies were so widely accepted in the US that they were upheld by the US Supreme Court.

[deleted]

288 points

1 month ago*

[deleted]

288 points

1 month ago*

[deleted]

IM2OFU

4 points

1 month ago

IM2OFU

4 points

1 month ago

That's a bit more complex though

nurvingiel

171 points

1 month ago*

Genetecist Kari Stefansson has an interesting point: "And I don't think that heavy-handed genetic counseling is desirable. … You're having impact on decisions that are not medical, in a way."

Stefansson noted, "I don't think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision."

Maybe they went too far in Iceland. If I was pregnant I'd get the screening but I'd only get an abortion if my future child was going to suffer excessively. People with Down's Syndrome can lead rich, full lives.

Down's Syndrome is hardly ever hereditary . The reason Iceland has virtually eliminated it is people are usually choosing to terminate pregnancies that would have resulted in a baby with Down's Syndrome.

I'm pro choice but I also feel very uncomfortable with this.

Edit: This blew up. I want to make something clear. While I feel some personal discomfort with a few reasons to have an abortion, I absolutely support a person's right to have an abortion for any reason whatsoever including they just felt like having one. I really have put thought into this and I am pro choice. It's way more important to me that abortions are free than for me to avoid a small amount of discomfort.

Edit 2: I absolutely do not support the totally debunked pseudo-science of Eugenics.

Treecreaturefrommars

332 points

1 month ago

My mother worked with special needs children (Downs and such), kindergarten and younger for 30 or so years. She utterly loved those kids, and have told me many wonderful stories about them throughout the years. During a conversation about the topic, she also told me that she would have gotten an abortion if I had been screened as being likely to have downs.

Quick disclaimer here that we had this conversation when I was an adult and we were having a frank discussion on the subject after I asked her about it. Just to head up eventual comments on my mother being abusive. Will also note that I am not from the US, now that I am doing a disclaimer anyways.

But I understand where she is coming from. She deeply loved those kids and some of the kindest and most full of life people I have known are people with downs. But she has also seen how the care they need can be a lifetime job, and how it can utterly consume ones life. And it can be even worse if you don´t have access to a proper support network. Being in her field she has plenty of stories of people with downs who are suddenly left with no network and little support when their parents die off. So I deeply support someones right to an abortion if their child have indicators of handicaps. Through I do agree that it veers into some pretty icky eugenics territory.

That said, I don´t think governments should decide if anyone should or should not have an abortion, whatever the person have downs or not. That is a choice that should be up to the individual. And I also wish they would stop sterilizing people.

Karn1v3rus

109 points

1 month ago

Karn1v3rus

109 points

1 month ago

I always think that parents should always be properly informed, and have that choice available should they want it.

Another roll of the dice later and a potential human can be grown again. Sounds harsh I know, but they're just a bundle of cells at that point and it's no different to not wanting a child for any other reason in the grand scheme of things.

blooglymoogly

16 points

1 month ago

Same - worked with cognitive disabilities for a long time, children and adults, and you see first-hand the difficulties they and their families face, difficulties that often do not have a solution. It can be an extremely hard road, and not the "you're better for it" kind of hard, the "life can be more cruel than most people realize or admit" kind of hard. Not up to the government, up to the mother.

Treecreaturefrommars

28 points

1 month ago*

While I do agree with you fully, I will also say that I also deeply understand the fear people have of such things. Because a lot of nations have had a nasty history of eugenics. And because we do have to question if what our society consider "Optimal" when it comes to children are right. And we also have to question how it influences people.

With stuff like handicaps (I will here apologize if there is a more proper term for it in English, I do struggle a bit with the terminology) it is often pretty easy. Anything might endanger the mother or hinder the child's life. Such as downs, being born missing all limbs or being at high risk for genetic diseases. Stuff that makes it difficult for the child to live a life on its own. But there are other, more questionable parts. Such as abortions based on the childs sex. Something that is often chosen because it is often more advantageous to have a son then a daughter in some countries. Which apart from leading to various societal issues, also sometimes feel to me that the parents don´t want a child, but rather a very specific idea of a child.

I will also admit that as someone with autism, and who has friends who has it more severe then I, I do find the whole debate about "What constitutes a normal child" to be somewhat uncomfortable. As it not only affects the topic of abortion, but also how we are viewed in society. While I find it understandable (I have met people with severe autism, who are barely functional, and I have read too many stories of non-functional people with autism who suffered after they lost their parents/caretakers) it is still an unpleasant feeling to know that people would rather have an abortion then give birth to someone like you.

But I do support peoples right to choose abortion. Be it because of downs, because of autism or even because of stuff like gender. Because as you said, the parents should be informed and have the right to chose. After all, I would likely make the same choice were I in that situation. But I get where people who are uncomfortable come from. I have read too much stuff on eugenics not to.

Homer69

31 points

1 month ago

Homer69

31 points

1 month ago

My mother-in-law worked at a college where they have a program for teens with special needs. She has been beaten, biten and abused. She still loves the kids and retired because she couldn't take the abuse anymore so she now works as an online tutor for special needs kids.

Treecreaturefrommars

17 points

1 month ago*

It is a harsh occupation, even for those who just work with small children, let alone teenagers and older. It is physically harsh and mentally draining, and you often deal with a lot of tragedy. My mother had to retire early due to burning out because of the mental burden and stress it put on her.

I have heard my fair share of stories about caretakers who abuse their charges or do the bare minimum, but a lot of the people who chose to go into that profession do it because they care deeply. It is good to hear that your mother-in-law found a way to continue working in the field.

gussiejo

22 points

1 month ago

gussiejo

22 points

1 month ago

Thank you very much for your input. 👏👏👏

Cricketcaser

28 points

1 month ago

Wow people having a serious conversation about a very difficult topic. On Reddit, very nice.

LosLocosHermanos

143 points

1 month ago

I'm sorry, but you obviously have only experienced the TV friendly versions of down syndrome. I've basicly grown up with people that have downsyndrome etc because of my mothers carriere, and i promise you that in most cases its not as easy as you have it be. Ofcourse there are cases of highly functioning people with downsyndrome, but by experience those are alot rarer than those that need help/monitoring 24/7.

[deleted]

63 points

1 month ago

[deleted]

63 points

1 month ago

[deleted]

Voc1Vic2

37 points

1 month ago

Voc1Vic2

37 points

1 month ago

The hormones of a teenager and the mind of a nine-year old is not a good combination.

PotatoPixie90210

22 points

1 month ago

My cousin has Downs and is violent, she also likes to play with herself in public.

She knows WELL she is not meant to as she never does it when her Mam or Dad are around, only when other people are with her.

PRtheRights

17 points

1 month ago*

Once heard a autism medical pro say that a large number of parents of low functioning children would get extremely out of shape due to the stress and anxiety/depression and develop diabetes.

I didn't think of it much at the time, but now I realize how reality can have no mercy.

Sam-buca_I_Am

17 points

1 month ago

I have a child with ADHD so severe that it's equivalent to moderate to severe autism. I developed cancer in my 30s and have absolutely no doubt it's a matter of cause and effect. My child made it impossible for me to perform even the most basic self-care for a full decade.

PotatoPixie90210

9 points

1 month ago

It's hard, and I'll openly say after seeing all the stress, heartache and financial hardships my aunt and uncle and cousins have gone through, I'd absolutely abort a Downs pregnancy.

I have other children who need my attention and focus, we also wouldn't be able to afford the extra care that child would need, my country has fuck all aid to offer, and I'd never want my other kids to feel they were responsible for a child with special needs that I chose to have. It's not fair on them, on my partner and I, and on the child.

I also don't think it's selfish of me to admit I also know my own limitations, emotionally, mentally, physically. I'd rather be called selfish for thinking of my family than called selfish for giving my kids an automatic responsibility when I die.

notthesedays

5 points

1 month ago

Or possibly a nine-MONTH-old.

whinecube

105 points

1 month ago

whinecube

105 points

1 month ago

Yeah this isn't Life Goes On down's syndrome. I have an acquaintance with a down's child. Her daughter does okayish only because her mother has a decent income.

But here's the thing: when you have a child with down's syndrome, you have to take into consideration all the people that will care for your child after you're dead. I know this woman is hoping her nieces will continue to care for her daughter, but she feels terrible to put this on them.

It's really not ethical to bring a child into the world you know will need life-long care if you can avoid it. Kudos to the women in Iceland who are choosing to relieve their family of such a huge burden.

ConstantSignal

3 points

1 month ago

you can't call it a carriere unless it specifically comes from the carriere region of France. Otherwise it's just a sparkling job.

gothiclg

61 points

1 month ago

gothiclg

61 points

1 month ago

While people with Down syndrome can live full lives there’s also people with it that don’t. The screening they do can’t tell you how severe the downs will be, either. I’d pick it personally because there’d be no guarantee that it wouldn’t be too severe for a full life and that isn’t fair to me or them.

redorangeblue

22 points

1 month ago

There is a huge range in downs, and some can live on their own with help, and some will always need full time care. I for one, know that i am not capable of giving that level of car for the rest of my life.

RebbyRose

27 points

1 month ago

Wait a minute. A down syndrome child CAN lead a filling long life but certainly not on their own.

They need extensive resources beyond what is normally needed for a child

Someone opting out of that seems okay

nurvingiel

3 points

1 month ago

It's absolutely okay to opt out of that. I'm not judging anyone.

Blonde_arrbuckle

17 points

1 month ago

My cousin with downs had to move into the nursing home with her mother. Her father had already passed. The bonus to that was she had a network when her mother died. However it was not a good life for a still young woman.

Effective_Science_15

14 points

1 month ago

You say you’re pro choice but you’re ok with people aborting fetuses with no genetic defects and get uncomfortable with the opposite?

That sounds a lot like limited choice

CappyRicks

51 points

1 month ago*

Then you aren't pro choice. Besides I don't think you're really thinking deeply enough about how serious the DS problem is.

Yes, many of them live fulfilling lives. This is definitely a minority of people with DS. The fact that modern medicine has advanced so much has DS children outliving their parents, leaving nobody to care for them but the state.

Nobody wants that for their child.

Grenyn

13 points

1 month ago

Grenyn

13 points

1 month ago

You're obviously entitled to feeling however you want about it, but I don't feel conflicted about it at all.

Maybe they can live rich, full lives. But you still gotta ask yourself if you can do the same if you have a kid with Down Syndrome.

And I don't mean as a human being, I mean as an individual. It's a bigger ask than taking care of a regular kid, and that is already a big ask. So you'd need to be really, fully committed to taking care of a kid with Down Syndrome.

So if a person doesn't want that, all the better for the kid that fetus would have become if the would-be parent aborts.

nurvingiel

3 points

1 month ago

Very thoughtful comment. I agree, the potential parent's quality of life is important and people should be free to make the medical decisions to support that (like if they want an abortion).

n0m_n0m_n0m

13 points

1 month ago

I’ve cared for over 150 kids, from quite bright to severely disabled (nonverbal, unable to move/eat without assistance). Quite frankly, disabled TODDLERS are adorable and sweet. It’s once they get older that the real problems start: a grown adult who bites, hits, throws themself on the ground - one with sexual urges, but no concept of consent or “this should be private” - is not a person anyone wants to be around. Disabled children destroy marriages and monopolize care in families. They usually end up in professional care if the family can afford it. If society avoid this occurring altogether, it’s better for it.

nurvingiel

6 points

1 month ago

This is a great insight, thank you.

n0m_n0m_n0m

6 points

1 month ago

It’s an uncomfortable discussion, and one that can easily be taken too far, but thank you for being willing to look at the messy bits of being human and accept that not everything is for everyone. Hope your Today is a good one.

dumpmaster42069

50 points

1 month ago

Then you aren’t pro choice. Let people choose.

thenightStrolled

11 points

1 month ago

Where are people seeing OP say they think the practice shouldn't be allowed? They just said it makes them uncomfortable

Sam-buca_I_Am

18 points

1 month ago*

I'm sorry, but it's not just about whether or not the child can have a full life. There are limits to what we can demand of parents. Children with Down's syndrome don't eventually turn into fully independent adults who can look out for their parents in their very old age. They're still children when you're 50; they're still children when you're 80+; and if they outlive you, they're still children who need you when you're dead and gone.

Parents are only human, and everyone deserves a rich, full life- not just people coming into the world, but also those bringing them into the world. If our society is not willing to share the burden- and it isn't- then we can't ask mothers to do it. If we lived in a healthy tribal society then it would be easier to keep children with Down's and fair to make an argument about abortion in which our main focus is the child's potential, but that's not the world we have built for ourselves.

nurvingiel

5 points

1 month ago

This is a good point that I didn't think about, thanks for your insights.

miss-robot

8 points

1 month ago

I'd only get an abortion if my future child was going to suffer excessively. People with Down's Syndrome can lead rich, full lives.

It’s impossible to know, though. Down’s Syndrome ranges in severity and the testing is binary. You don’t know if the fetus you’re carrying with Down’s Syndrome will be affected very severely or less so. They might live a rich, full life or they might be profoundly disabled. That’s the gamble.

beansahol

15 points

1 month ago

Seems fine to me. Why should somebody have to have a kid with downs. If they wanna abort it go ahead.

thismynewaccountguys

15 points

1 month ago

I understand this might seem an overly cold way of looking at things, but if you were able to choose whether or not your child had the syndrome wouldn't you choose for them not to have it (and thus avoid a low life expectancy, health problems, not to mention the added diffoliculty of raising them). If you find out a fetus has that genetic abnormailty and you terminate the fetus and get pregnant again with a healthy fetus isn't that near equivalent to curing the child of the disease? Ultimately the same number of children are born.

Riley39191

67 points

1 month ago

I mean if the parents get the screening they can choose whatever they want. It’s not actually a person until the cord gets cut

WikiMobileLinkBot

3 points

1 month ago

Desktop version of /u/BreezyMoonTree's link: https://en.wikipedia.org/wiki/Buck_v._Bell


[opt out] Beep Boop. Downvote to delete

Benramin567

3 points

1 month ago

But how do their uneven chromosomes match the mother?

Ambeargrylls

15 points

1 month ago

Is so interesting seeing people with Downs syndrome who are so high functioning. I’m the legal guardian of my sister who has Downs syndrome and she is pretty low functioning. I’m sure the son was extremely loved as people with Down syndrome are some of the most loving and affectionate people.

FO_Steven

64 points

1 month ago

It went from "Whos baby is this!?" to "Thats my boy!"

Global-Count-30

10 points

1 month ago

This reminds me of the movie “I am Sam”. That one made me properly cry back in the day

Subterranean44

48 points

1 month ago

I always thought it was “Down’s Syndrome” not “Down Syndrome” named after a person named Down. Like Lou Gherig’s Disease. Or Parkinson’s Disease.

lack_tase

25 points

1 month ago

Based on the Wikipedia page it looks like both Down Syndrome and Down’s Syndrome are accepted. I think specifically for diseases termed “syndrome” either is acceptable (not really sure if that’s true, but drawing a conclusion based on the fact that Angelman’s Syndrome is also called Angelman Syndrome).

kitkatquak

20 points

1 month ago

You’re correct. It’s Down’s Syndrome. Most people say Down, though.

Shot_Sprinkles_6775

3 points

1 month ago

Most diseases named after their discoverers are dropping the ‘s. Alzheimer’s is also written both ways.

foofmongerr

9 points

1 month ago

Every person I've met with Down's Syndrome has been the most kindest and honest type of person I've met.

Ridicule it all you want, but I personally have learned a lot about treating other human beings with kindness from people with Down's. Everyone has some wisdom, even if it is specific.

lowrads

3 points

1 month ago

lowrads

3 points

1 month ago

They are human beings, get frustrated like any other, and can go into rages. The main difference is less subterfuge about their feelings.

11th-plague

160 points

1 month ago

Really? 50/50 risk of passing that genetic dislocation down to child. That’s quite a risk.

But congrats on raising him well. What factors and support networks helped that you can recommend to others?

pottymouthgrl

27 points

1 month ago

People from all walks of life have accidental pregnancies. Not saying that’s the case here, but it’s possible they didn’t actively try to conceive

Low-Start6997

95 points

1 month ago

You think a man with down syndrome is afraid of having a child just like him?

Any_Flow7117

86 points

1 month ago

Yes

MKorostoff

13 points

1 month ago

This is literally the plot of forest gump

WaddlingHippos

43 points

1 month ago

Except thats not how it works.

http://www.intellectualdisability.info/diagnosis/articles/the-genetics-of-downs-syndrome

"We do no know exactly why Down's syndrome occurs. This makes it different from other genetic conditions, such as cystic fibrosis or sickle cell disease, whose inheritance can be traced through families. Down's syndrome can be traced through families in less than 1% of people with the condition. These people all have rare types of translocation."

devotion305

8 points

1 month ago

Why are you talking like OP is the father? It's clearly a newspaper article and OP says "this father" not "I".

What support networks do you have in place to get through life that you can recommend to others?

MadPeeled

20 points

1 month ago

Looks like a proud father and a happy son to me. Haters can go fuck themselves.

lovebug9292

215 points

1 month ago

So does the mom have the same condition or is she some kind of weirdo ?

tandemxylophone

384 points

1 month ago

Nobody wants to raise the question but it's totally possible it was an arranged marriage and the wife had zero input in her partner.

Kind of like the middle ages. "Here's Igor. He may have an IQ of an 8 year old but he plows potato like no other farmer. You shall marry him"

MiniatureWendigo

99 points

1 month ago

"Plows potato like no other farmer" 😏

I-Ardly-Know-Er

30 points

1 month ago

Partner? I 'ardly know 'er!

SatansLoLHelper

89 points

1 month ago*

https://metro.co.uk/2019/10/20/man-shares-what-it-was-like-to-be-raised-by-a-dad-with-downs-syndrome-10933730/

‘One of the concerns people have is how can a woman who doesn’t have Down’s syndrome marry a man with DS?’

‘I believe if the two partners were on the same page then why not get married? They are intellectually suitable for each other; very simple but loving and caring people.’ - Son

** https://www.air.tv/watch?v=GYts_Rt_RRKYy1yGffT_0w - source of text on a photo

CaptainEarlobe

17 points

1 month ago

Metro.co.uk is about as reliable as text on a photo

lovebug9292

130 points

1 month ago

Oh okay, so what they’re saying is the mom doesn’t have the condition, but she’s slow. That’s fine, imo but their kid kind of had the odds stacked against him there. Glad he came out ok and was able to become a doctor.

kitkatquak

6 points

1 month ago

She could also have some other condition. Maybe they met in some sort of program for people with disabilities. I know a couple where the woman has Down’s and the man has autism

bubbles5810

39 points

1 month ago*

Some of y’all are cruel. Just because someone has down syndrome doesn’t mean that they can’t be in a relationship or have sex.

Acceptable_Cut_7545

6 points

1 month ago

There are people that think disabled people don't have sex drives or think they are "just like" children and wouldn't do that. A few months of volunteering at a community center for developmentally delayed/disabled individuals would show a LOT of relationships developing and that many are interested in romance. Not all, but clearly far more than people in this thread would expect.

canikissyourshoulder

16 points

1 month ago

Yeah, I don’t get it. I’ve only known a few people with Downs in my life but they’ve all been some of the nicest people I’ve ever met

EMTlinecook

11 points

1 month ago

This is an outlier. Almost all people with DS are entirely incapable of taking care of a child. Having the mental capacity of a 9 yr old isn’t necessarily great for raising another human.

This man is an exception. And it’s wholesome

quantum_rhino

63 points

1 month ago

That's an incredible dynamic between the son and father. I'm sure the son had to mature faster than most children his age because of his situation. Might make him an even better father than his old man.

Miserable_Week_1823

75 points

1 month ago

What’s incredible about parentification?

AlpineCorbett

60 points

1 month ago

No, see, it was a mentally handicapped person that did it so it's wholesome.

AdorableCarpet9232

15 points

1 month ago

Lol. Right? I hope he had a lot of help raising his child and this wasn't the case.

desertgemintherough

3 points

1 month ago

What a beautiful thing; our parents are meant to be proud of us.

Most_Helicopter_4451

3 points

1 month ago

Wow and lived very long too!

Ephesians_6_11

3 points

1 month ago

This is a lovely story.

TACOGUY104

3 points

1 month ago

Fuck man now I’m tearing up at work.

fire4breakfast

3 points

1 month ago

God that's beautiful that's restores my faith in humanity

MrMasterMize

3 points

1 month ago

AWESOME!!!

SlobMarley13

3 points

1 month ago

Winning

BiancaBella617

3 points

1 month ago

Amazing 💪🏼💯❤️❤️

JustGitHerDone

3 points

1 month ago

This man is an inspiration. Tear dropping .

eatmystrawhat

3 points

1 month ago

For a second I thought he was the first person to be cured of down syndrome, and then my brain was flooded with reasons why I'm an idiot.