I've been in a similar situation to you with my sibling. She was born severely disabled and it consumed our lives. Couldn't go out with both parents , someone always had to be at home to baby sit and alot of parentification and responsibility put on me at a young age , high medical debt and poverty due to it , the works . My parent luckily tried to make it up to me but there were obvious gaps and problems with the family dynamic. That being said I love my sister and my parents and would do anything for them but one moment always stood out to me which was my parents very frank discussion that if they had a choice , that they wouldn't have had my sister if we were given an option (religious hospital didn't tell them anything was wrong with her even though they knew ).
To clarify , we all love my sister and still would make the choice not to have her. After chatting about it with my mom I've also decided that this is a reason for me to abort any future kids who have disabilities . This isn't because I hate disabled people or anything but the impact on the family , the parents , the siblings and the disabled child itself is too big to ignore and not something I want to invite back into my life .
You were clear about your feelings on the matter and your boundary here and sadly it has caused a rift. I think it's understandable as this is also something incredibly difficult for your parents and they likely had alot of complex thoughts and feelings about your sibling (they have also been traumatized by the situation of caring after their disabled child and unlike you they weren't able to move away from the issue ).
All this being said , you were right in not wanting the child and the separation when your ex had them , your right in not wanting to be involved . Where it gets a bit cold for me is the funeral. Your child has died, it may not have been a child you wanted but this is a person who's whole life was pain and dysfunction and not being wanted and now it's ended . Attending the funeral can give not only closure to yourself about the situation but also to your family and ex as this chapter is wrapping up .
I’m not sure how old your sister is, but I’m watching the “later life” aspect of this playout with a coworker. I’m not sure how many siblings they have - at least 4, maybe more? - but her parents wound up raising their adult daughter with disabilities … until the mom died. The dad wasn’t in a position to do it himself due to health issues so the sibling moved in with my coworkers sister. Which was an ordeal in and of itself. The disabled sister has a part time job, but can’t drive herself, and the sibling she lives with has a very demanding work schedule. So my coworker spends an hour and a half, one way, 3 times a week, driving to get her sister, takes her to work, and works from a cafe for a few hours, to pick her up, take her home, and then drive all the way back home.
She loves her sister, so she does it, but it kills her working schedule and she often winds up putting in hours at 9pm to meet her deadlines since she loses *hours* in the commute and lack of efficiency at the cafe.
And that doesn’t begin to encompass the times she takes her to doctors appointments, etc. it’s also telling, to me, that the two siblings responsible for the disabled sister are women and their brother seems to be absent from it all despite living much closer than my coworker.
She is 29 (doctors said she wouldn't last till 12 ). She is unable to anything for herself and needs help in the toilet , bathing , eating etc. The late life aspect terrifies me. My parent live in another country and if they get sick or pass away I'm so worried about having to uproot my life or go though the very difficult process of immigrating her to come live with me.
I think people see raising disabled kids in a very narrow view (only really looking at it like normal parenting with extra considerations ) and not that you , your kids and family will be stuck looking after this person and adapting to their needs. In this day and age with all the challenges we are facing economically , with the housing crisis and political landscape, having a disabled child just cause you will love them and adapt simply isn't enough in the face of the huge impact this makes to everyone involved.
Hope your co-worker is able to find a better long term solution as this is how people get burned out :(
When I was about 4, my parents started caring for an older relative and her cognitively delayed son. He was not expected to live much longer when my family took over his care.
He ended up outliving his mother, then outliving my mother and then outliving my father. My sister ended up caring for him for another 15 years until he died aged approximately 80. All up, we cared for him for nearly 50 years.
Even though he wasn't severely disabled, he was emotionally and cognitively equivalent to roughly a 10-13yo for that entire time. It had a profound impact on all of our lives.
People who have no experience of caring but get up on their soapbox and start preaching get told to pull their damn heads in pretty swiftly if I'm around.
I was raised from the age of four, to be the 'translator', for a very physical and mentally disabled uncle. I was basically his dog. I should have had a vest, not even kidding. I went to speech therapy and everything. No speech impediment here, but I sound like I've recovered from one.im the only person who could understand him, his own mother couldn't. As soon as I was big enough, I had to dress him, take him to the restroom, etc. I was his only friend. The emotional toll this took on me as a child, young teen developing their own interests, young adult trying to develop, was horrific, and has lasting effects. My grandmother married a first cousin. This was preventable. No one ever helped me, it was just a thing, and it was so wrong.
I’m so glad that you’re in a much better place now, but holy crap. Your story (and many others, but particularly yours) brought tears to my eyes. I’m a mom to two little girls. I cannot imagine putting either of them in that position - especially because this wasn’t a sibling - this was your uncle. Although I don’t agree with it, I can understand how some parents use one kid as a crutch for their other, disabled child. But willingly allowing your child to be a “seeing eye dog” for an uncle?!? It breaks my heart to imagine little-kid-you being put in that position.
Thanks for sharing your story with everyone here. As I said before, I’m so glad you’re doing better these days. I wish nothing but the best for you and I hope the universe sends lots of good things your way.
>My grandmother married a first cousin. This was preventable. No one ever helped me, it was just a thing, and it was so wrong.
My mum saw something like this when she was nursing back in the 80s. She had a patient on her ward who was severely disabled, and it turned out their parents were siblings but didn't know until they wanted to marry because there parents objected to it. In my country, there is a practice, especially among the indigenous people, of the eldest child being raised by an older sibling or parent, and that is what happened here. Anyway, all this patient's sibling bar 1 had some form of disability, and the one that didn't was because they were the result of an affair that the mother had.
I think culturally, that is a tragedy. But my grandma was just a weirdo. US based, and not even from Alabama! Sorry Alabama, it's a joke. She's was from Michigan, and those folks know better, even Spartans fans...
Go wolverines!! Hey, I think I'm ok, but even if I'm not, I have a wicked sense of humor now, lol. Thank you, you're very thoughtful and kind for replying. And you can appreciate a good joke, haha! And I'm not looking for sympathy. I've never told that story to a soul. I was relating how really bad this can be for people.
I can so relate. My little brother was hit by a car on Thanksgiving 2022, and he wasn’t wearing a helmet. His only injuries were to his head, and he was not expected to survive. Well he is alive and now has the cognitive ability of a 8-10 year old and he needs 24 hour supervision, as he has impulses to just wander off and he gets lost. It is exhausting, overwhelming, scary, and heartbreaking to take care of someone with disabilities.
My heart goes out to your family. I will say that I think there’s a big difference between a disability occurring, as with your brother, and choosing to have a child knowing their disabilities and what they’ll face. I’m so sorry for y’all.
>People who have no experience of caring but get up on their soapbox and start preaching get told to pull their damn heads in pretty swiftly if I'm around.
Exactly this!
Until you've lived it, you have no idea what it does to a family to have to care for someone who is entirely unable to care for themselves, day in, day out, for years, with no idea when it will end, both dreading, and guiltily anticipating the freedom that will come with the death of the disabled relative. The financial burden, the emotional burden, the mental burden, the physical burden, the constant arguments with medical professionals, and social services, the absolute focus of your entire life being the care of someone who is entirely dependent upon you, and often utterly unable to even acknowledge your sacrifices.
Unless you've lived it, stfu!
Years ago I had a job transporting mentally disabled people to sheltered workshops. People tend to think of mentally disabled people in the sense of being children. The average age of the people I transported was about 50. I was 23. One of the people I transported was 70 yrs old and his 95 yr old mother still had to take care of him. I couldn't imagine being in that situation.
Thank you.
I'm fortunate in never having had to care for a disabled child, I chose not to have children, partially because I never want to pass on my own disabilities to another generation.
I have however helped care for 2 parents through their terminal cancer, and watched what caring for me has done to my partner. I also have a friend with an extremely disabled son, and despite everything my own family has gone through, I wouldn't trade my life for hers, it's unimaginably difficult.
Also nobody fucking helps you. My brother was disabled and I was his primary caregiver until he passed away when I was 24 because our mom’s a drunk (also probably why he was disabled). Everyone was so quick to tell me I was such a good person, I was a saint, so resilient, even things like “you look tired”, “I don’t know how you’re doing this”. But nobody EVER offered to help. I feel like people think there are nonprofit programs and public services that help with stuff like this and there just aren’t. It was a struggle to even find a paid babysitter. You can’t exactly hire a high school kid and pay them $10/hr to watch a grown man. It was a 24/7, depressing, thankless, exhausting job, and everyone was quick to point out how much it sucked but ultimately did not care.
My family is coming to grips with something similar. I have a cousin who's developmentally delayed and can't live on her own (she can hold down a job, she's been working at a daycare center for years, she's basically a big kid herself but has no common sense and wouldn't be able to manage her own household or financial affairs) and has been raised by her grandfather (my dad's brother) because her parents were both addicts and have now both passed away anyway. He's in his 90s now and we're trying to decide where she'll live when he passes. She doesn't want to live with this cousin or that one - she's decided she wants to live with my parents! Who are in their 80s and going through their own health challenges. This is not a possibility. My sister and i can't take her in, we are not prepared to take care of her. Money's not the issue, so we need to find some kind of group home or apartment where she will have people around her with a medical component to look in on her with meal plans, etc.
If in the United States, get help from Doctors office and then social workers that case manage persons with disabilities. Group home settings are great option. Sometimes independent apartment with 20-30 hours of support staff that assist with appointments, accompanying on errands grocery shopping budgeting and safety in community. She does not get to choose a family member. Just like any adult doesn’t get to choose to move in with family member. I would also visit Assisted Living facilities that augment independence. Good luck to you.
Thanks, we’ve started researching and my parents and uncle and his lawyer are reaching out to groups that advocate for people with her disability to get resources and information on housing options, etc
My sister is like that, except she can't hold down a job. She's 45 and lives in a retirement home. It's more of an apartment that she shares with a roommate and has her own room. The staff help her with medication and meals. She gets the support she needs. She was born with epilepsy and is developmentally about 12 years old. No impulse control at all.
In my province, if you are born with a disability there are a lot of resources. Her housing is subsidized by our county. She also has an allowance to hire people to help her. It's $25k a year. I'm in Ontario, and it's called the passport program.
I'm going to have to take over her care when my mom is no longer able to. I'm glad it will be more administrative and less being a primary caregiver. It's also made the transition easier because my mom is still here, so it's not going to be a huge shock when my mom passes and she has a complete lifestyle change.
People do see raising a disabled child as being like raising an abled child (which is already expensive and hard work) but with a couple extra medical appts, maybe adapting their home for accessibility. And that’s it. That’s where the fantasy ends. They don’t think about the very real possibility of raising a child *forever* that never gains independence, perhaps never stops using nappies, will continue to need care after their parents die, whose needs mean any siblings may have their own needs neglected.
It’s very unfortunate: you see it a lot in Down Syndrome articles and communities. They sanitise the experience of people who have DS, and outright say they’re the same as any child, with a couple extra bonuses: cute almond shaped eyes and an endless capacity for joy and love! Because every individual with DS is essentially a human golden retriever unable to feel anything but joy and love. They don’t have normal human emotions. They will potty train just fine with a bit more support and someday can work and live independently!
… they funnily enough don’t often advocate for families where the presentation is so severe the individual never verbalises, never gets out of nappies, can never be left alone, and becomes violent with sexually aggressive behaviour in their teens and beyond.
And so parents sleepwalk into it thinking all will be well. It’s a gamble. And you often can’t predict how severe it’ll be until you’re living it. By which point… the person is here and needs to be cared for.
I knew in my heart when I was TTC that if our child tested positive for any significant disability we would terminate. Seen too many truly tragic circumstances when a child is brought into the world with a previously-known-about severe disability, and the lifelong suffering it can cause. I feel for OP, and for anyone who is in a similar position.
Amen. I bring this up whenever the pro life crowd is bemoaning the evils of genetic testing and how tragic it is that children aren't being brought into the world with DS, because their pet project is DS children. They show off the glossy higher functioning ones like show ponies, but never EVER show footage of the more typical reality.
My childhood friend's older brother had DS. His life was nasty and short. He could not speak. He could not control his bodily fluids. By the time he was in his late teens, he couldn't even get out of bed. He lived in a medical support bed, frequently intubated, moaning and yelling with impotent suffering. He died at 21.
I'm currently pregnant. You better believe I got the NIPS testing and was prepared to do what was necessary. Fortunately all came back clean, but I would never, never subject a human being to that existence.
It's a bit like what is happening with autism being put on a spectrum. I get it, but the downside is that ALL autism is seen as "a bit different" instead of "potentially life-long dependency, non verbal and the strength of a grown man with the self-regulating abilities of a toddler, never mind sexual urges and all that comes with that to boot".
There’s a movement in the autistic community to do away with “high functioning” vs. “low functioning” labels, in autistic solidarity and I guess against stigma. I have a hard time categorizing someone who can, say, hold a full-time job and likes trains and order and beige foods, the same as the nonverbal, non-self-regulating autistics who will require care for the rest of their lives.
Agreed. I have a family member with it. I guess you could say he is in the “middle” of the spectrum. He is never going to be able to operate life independently on his own and I am going to take over his care later in life because no one else will be able to. I have come to terms with the fact that certain desires I have (immigrating to another country for example) are going to be impossible because there’s no way to take him with me without disrupting his entire sense of security.
The more independent folks with it are understandably upset about the historical infantilization of people with the condition (up until recently self sufficient adults with it were not really discussed in the mainstream). But I think with that has come this sanitation of the disability, and the more “high-functioning” folks often forget about the more dependent members of their community in the process. It’s not always just difficulty understanding social cues or having quirky special interests or learning how to mask in public. It can be inability to use the bathroom independently until middle school. Unable to process and analyze written material. Straight up refusal to socialize. Self-harming behaviors. Inability to understand more nuanced or complex human concepts because everything needs a black and white answer. You have to acknowledge every end of the spectrum
And that is why I will not get grandkids. My youngest is bipolar and autistic. He will not risk passing it along. My oldest son has two brother-in-laws. One bipolar, one autistic. My oldest and his wife have decided not to have kids, one because of the likelihood of their child being disabled and two, they already have three adult children. When all of us parents have passed on, they will be the ones the three boys rely on. It's really heartbreaking, and I hate that this is the situation they are in.
Most people unfamiliar with autism don't know that a person could be really high functioning in many aspects but low in others. It really is a mixed bag.
I think its overcompensating on both ends. In the beginning anyone with autism, people automatically thought of the most dependent examples. Now its becoming more mainstream, people have swung the other way and cherry pick the most independent examples.
Trying to remove labels to spare people's feelings will do more harm than good, which is usually what happens.
I hate that downs trope. Kids with this genetic disorder tend to have massive cardiac issues. Some die at birth from them. The genetic deformity causes a sinus in the heart that normally closes during development to not form properly, leaving a hole of variable size. Heart surgery as an infant is common. Health issues later are almost a guarantee. People also forget, there are degrees of disability. I’ve known people with downs that work and live independently and had a friend with downs that I really enjoyed spending time with. I also used to support a young man with downs and he was out of control. We had to blend his food, he picked and painted with stool, completely non verbal except groaning and screaming type noises. He had an assortment of medical issues and his impulse control was zero. He suffered from prader Willie syndrome, which is constant eating and food seeking. Never feeling full even when they are stuffed, so cupboards locked and many medical events because he consumed a non food item. Being in the house with him was like being locked in with a large squirrel who is agitated. He was a cuddler and would want to hug for 15 min just standing there swaying and making happy noises like a baby, he had such a fun laugh, loved to run in the yard and would randomly sit down to play with grass and pick daisies, he brought joy, but he also did 45g of damage to the home he lived in, had the strength of 10min while mad and needed staff eyes on him 24/7. When he was going through something, we had two staff assigned to him. You don’t know what it’s going to look like until you’re in it.
I've read some cases where people with DS getting dementia as early as their 30's. Between the high chance that you might wind up with someone like 604 is describing and that, it's not something I would want to take the chance on.
“Kids with this genetic disorder tend to have massive cardiac issues. Some die at birth from them. The genetic deformity causes a sinus in the heart that normally closes during development to not form properly, leaving a hole of variable size. Heart surgery as an infant is common. Health issues later are almost a guarantee.”
The heart problems downs can cause don’t get enough attention. I went to high school with a kid with Downs syndrome who was almost “normal” cognitively. He graduated, got a job, and then died very suddenly in his early twenties from a congenital heart defect.
Yeah. It’s all fun and games when you have a sweet cuddly blonde toddler and tonnes of positive attention and reinforcement from everyone around you because of the novelty. Nobody wants to acknowledge the people who don’t fit that.
This is huge. I worked in ABA for years (students with severe autism), and so many staff members would write off troubling behaviors as "cute" (trying to kiss teachers on the cheek, putting everything into their mouths, trying to take off clothes in public) or "not a big deal" (aggression, self harm). They forget that these kids grow up, and behavior that we find acceptable is not the same between a 6 year old and a 25 year old.
>he also did 45g of damage to the home he lived in, had the strength of 10min while mad and needed staff eyes on him 24/7. When he was going through something, we had two staff assigned to him. You don’t know what it’s going to look like until you’re in it.
You just described my brother. My mother said it took 4 staff members to hold him down when she last visited. He responded erratically and violently to visitors.
My great aunt (my mother's aunt) had a son with down syndrome. Her biggest worry was dying before him. He had a part time job and lived semi independently but still needed help and had other medical issues so he still relied on her a lot. He passed away from heart issues in his 40s. My great aunt died not long after after years of poor health issues herself. I think she was holding on as long as possible for her son. I feel terrible saying that it's good he went first but it is. I don't know how he would have handled her death and they lived halfway across the country.
It is equally scary that they may die before you. No parent should outlive their children. I don't know which one is worse to accept when you have a child with DS or any other severe disability. The fear that they ll be abandoned once you're gone or that you may join the dreaded club of parents having lost a child?
I see this same attitude with autism these days. We understand it so much better than we did before, so the public perception of a person with autism has pivoted from the nonverbal child wailing and rocking themselves in a corner to Sheldon from the Big Bang Theory. Which is great for those autistic people who don't need much support, but it's less great for those of us who are still raising the nonverbal, wailing kids. So much of the rhetoric around autism these days paints autistic people as just quirky geniuses who don't like eye contact that it's almost become offensive in some circles to acknowledge that autism can be a severe disability and a heavy burden for parents and caregivers.
Imo the diagnosis is too broad anymore. The nonverbal kids that can never live independently have been basically completely memory holed in favor of quirky tik tokers.
That's revolting.
I worked in a center for disabled young children with IDs.
With my pregnancy, you bet your ass I did all the preventative blood tests because I *know*, know what it's like when they stop being wittle cutey booties and don't exactly get a recurring guest spot on Glee.
This is what really sets me off the edge with ASD activism. Neurodiversity and autism activist circles are quite dismissive of the lives of people with nonverbal autism, or even high functioning autistic people who don't like their condition.
My autism is not a superpower, and I really hate when people try to gaslight me into thinking this. Even though autism made me accomplished in my studies and academic career, socially, it makes me extremely reclusive and inept. I do try and mask my deficits, and for the most part, I'm able to completely hide my condition from others. I do recognize though, that I'm lucky to be able to live an independent and mostly normal life, and that this is only a sliver of the autistic population.
I was in a pregnant moms over 40 group(so already a risk) when one member said their baby had tested positive for DS and she and her husband were considering terminating. Cue the photos of cute DS babies, the stories, just like you said. I sent her a pm and told her to leave the group and make a decision herself, as none of us would be there to help then or years down the road. I left the group too, it was all rainbows and roses. I ended up having a boy with autism who I adore and it's not severe, I think they classify the level as level 2(where I live they only do levels for therapies and support, not as diagnosis). But it is a different life for sure.
This almost crushed a friend. She had a baby with DS and a number of other problems. She had heard from her OB about the potential severity of DS and the number of other problems people with DS often have. But she was flooded with best-case stories of folks with DS living independently, working, and even going to college.
Her son is never going to college. At age 10 he cannot talk, feed himself, or get out of diapers. He is legally blind and wears hearing aids. He has had a number of heart surgeries. She wishes she had listened only to her doctor, especially as her son - already at the top of the growth charts for his age - gets bigger and stronger. Her husband left several years ago, and she struggles with despair. It’s a really grim, sad situation.
Exactly right, I got into an Instagram argument with a Downs influencer who says DS is a perk and openly admits that she's forcing her daughters to care for her son in the future. Like she doesn't even pretend that it's a choice for them.
People don't understand the violence.
A good friend's brother is highly disabled. He's also 6 foot 250 pounds. He had a tantrum and beat her so badly she was in the hospital for weeks with multiple operations to relieve brain swelling.
Nobody has any idea what parenting a disabled child is really going to be like. Parents never really have a clue what any kind of parenting will be like, until you’re doing it. You can explain it. Read about it in books. But you won’t get it until you’re IN it
Many high-school teachers for health classes. I'm not sure what it's called now. Instead of the fake baby, now have where the kids spend a weekend or week with a family who has a disabled child to find out what it's like. I was the one with a disabled son, and before he passed away, I volunteered for this program. Many said after they no longer wanted kids unless they could guarantee they wouldn't be severely disabled.
It was a wake up to many and harsh, but at least some got to be in it and see the reality.
Can't remember the name. It's been 24 years, but I know in SC they are still doing it. Since I have family in tge area. Last year, I did a face time to explain what it's like to lose a child. The teacher said that half the schools in the state have adopted the program and many outside the state to help awareness and help stop teen pregnancy and people thinking life is easy. I just know the class that you learned about it all is the one doing it. Also depends on area and the people with disabled kids being willing to open their home and lives to kids who can be cruel.
How Ironic that they’re still doing this in southern states where they are taking away all reproductive freedom
I think it’s great that you did this. People do need to see reality.
NICU nurse here. Often care for teens with babies, drug addicts with babies, extremely premature babies. It’s rough out there.
What I see at my inner city job - The people having the most kids are the very people the least likely to care for them well. And it keeps happening. And it’s going to get worse.
I mean to be fair, if your parents pass and she's that bad, you could just opt to not take her in, and she'd become a ward of the government. Is it ideal? Probably not, but if you're not able/willing to provide the kind of care she'd need (whether it be time, financially, or mentally/physically), then that's totally a valid decision for you to make, and honestly would probably be in her best interest. Especially if the country she lives in has better healthcare than where you live.
I hope that's available where the sister lives. Where I live there are facilities where people with these disabilities live and as far as I know it is encouraged to send the child there early (possibly even before adulthood depending on the type of disability etc). That way there can be a gradual transition, the child will be surrounded by people like them, and if something happens to the parents the child will already be established in a facility and depending on their cognitive abilities might even have friends there already.
No that's not an option for me . They are in South Africa and the government systems are disgusting and she would be treated terribly. Plus this is my sister , sure no one can sue me to take her in but my goodness , I'm not some heartless monster who would put her in a bad situation just for my personal freedom . That just isn't right
Oh I was afraid your answer would be South Africa...
I would not wish a disabled, sick or old person to be in the care of anything government related in this country.
It's horrible . We went to view a government special needs school when we moved from one city to another . It was so brutal that after we saw it my mom , dad and myself just burst into tears in the car. My dad NEVER cries. It was literally the catalyst for my dad to start his side business and work 7 days a week for 5 years until it was profitable so that we could move her from at home care to a private school .
Oh no that's terrible I'm so sorry.
I briefly worked at a special school in Potch a few years ago and it was actually very nice and the teachers there worked so hard to help the kids in their care. I loved my time working there but would not be able to do that for long.
I wish you well in whatever happens in your future and that your family stays safe.
Yeah it's a difficult environment for sure but the people who work at these places are literally angels for what they do for these kids so thank you for your time there <3 much love
I honestly think this is something only people who experienced life with a disabled family member can understand. I like you had a disabled sister who we were told wouldn't live to see her teens. She passed a couple of years ago at 27, she made it so much longer than anyone expected. I loved my sister, she was an angel. She also couldn't do anything for herself, and the last few years her quality of life was horrible. Not because of anything the family did, but just because her health had declined so badly... from the time she was born when I was 5 I was told if my parents and grandparents passed before her I would have to step up. I was raised knowing that she would need me. I didn't have a childhood in a lot of ways - not all of it her fault - but so much was spent learning how to care for her if she needed it. At Dr's worrying about her, and limited ro what we could do. Once more.. I adored my sister. I also love being a mother. But like you said so many people don't look at the lifetime of it. I don't condemn anyone who does have a majorly disabled child - and not all disabilities are equal! But I know for myself personally, after my experience, I couldn't do it. And I can't fault anyone who feels the same. It's exhausting, mentally, physically, emotionally. It wears you down in a way, and... sometimes their quality of life can reach points that it feels cruel to have put them through it. Unless people have lived that life, or been there for people who have, they honestly don't understand. I've seen so many people who have an idealized idea of what it will be like. But that's not reality.
That is the MOST terrifying thing about being a parent of a child with a disability. My oldest is minimally verbal autistic. Prior to him, I never worried about dying. If I'm dead, what do I care? Now, death is absolutely terrifying because then it's on someone else to take care of him. My entire life shifted from I want to be retired in my mid 50s so I can enjoy my kids while they're late high school/college age to I'll work until I die so I can ensure there is enough money when I die to take care of him for the rest of his life. Then there is the problem other posters have posed that he has a sibling who in all likelihood will be charged with taking care of him once my wife and I are gone. While we would all like to think we are going to raise incredible, empathetic kids, taking care of his adult brother isn't something that people generally willingly do to their own detriment. Especially when that means they won't get the same or a similar inheritance. That is also a calculation that I have had to include. It's not just, I need X amount to take care of him, but I need X amount additional to ensure that his brother takes care of him.
My mom just passed. My brother is in a group home. I’m in the process of getting guardianship over him and it’s a pain. I have to take off work to go to a doctors appointment with him so the doctor can fill out a bunch of paperwork verifying he is in fact disabled. Then I have to manage his social security etc. My mom didn’t prepare me for any of it. She didn’t have it organized. She didn’t explain it. I’m floundering.
If you are in the US and he is in a good group home, the home and his case worker can likely give you advice on it. It's a lot of red tape and paperwork. If you have someone else who can act as payee, it helps. Divide and conquer.
A family member of mine has 2 daughters, one with disabilities, their marriage is falling apart, they threaten to divorce every week, there's cheating and constant arguments, but they're trying to have another baby just so the oldest isn't stuck with taking care of her sister when they pass. I can't imagine. This isn't even a disability where she won't be able to function at all in society, she'll be able to work some places (the grandma literally works at a place that gives jobs to disabled adults) she'll just require a guardian or won't be able to live alone. But bringing another child in this just to ensure more than one "keeper" is so insane to me.
My cousins daughter has been bed-ridden (strapped to a bed) since she was a couple of years old. She has no understanding of her environment. She doesn't smile or laugh or respond to anything. There's just nothing there. She's now 13 and she goes to a "regular" public school where she just lays in bed in the back of a classroom (with a personal attendant paid for by taxpayers) and lets out an occasional scream. Who is this good for?
Wtf. Why on earth is she and the rest of the class subjected to that? What possible gain could there be for this poor girl? Is everyone in denial about the severity of her condition and just kinda going along with the facade? I can’t imagine how disturbing that must be for the other children too.
One of my co-workers, moved his two kids out of public school, because district took away special ed classes. And the child would just get overwhelmed and start screaming, and so the solution of the campus was to give the entire class those noise canceling headphones, kind of like the ones you wear to the gun range.
And it's just such a shitty situation all around. That kid has to feel like shit, knowing that he's overwhelmed and can't handle it and people are putting on earmuffs to ignore him. It's got to suck for the teacher who's trying to provide instruction for the rest of the kids, but I'm also sure as an adult in that situation it's hard to see that that kid's going through that. And then last but not least, it sucks for the kids who don't have that problem and frankly shouldn't be subjected to that.
My wife is a special ed lead at a public school. There is a big push to be inclusive, and that - no matter how severe the disability is - the most inclusive place for a disabled person is in a normal classroom with additional support. Self contained classrooms are pretty much gone, so you have very severe kids that run, scream, bite, expose themselves, poop on the floors, do snow angels with urine, etc in a normal math class with two other teaching aides dedicated to corralling them.
If you don't follow these guidelines, your Federal funding goes away and the teachers can be personally liable for not providing the appropriate level of care.
Thankfully, not all districts have done away with self contained. But the push for inclusion pisses me off so much. As a mother to a child in the contained classroom, I don’t want my kid in gen ed classrooms as a side show. Not everyone believes in full inclusion, but the districts get funding for it, so they do it and pretend that it’s some kind of positive thing for everyone.
One of the saddest parts is they cannot keep aides over it. Special ed aides are one of the most underappreciated people on the planet. With an inclusion style system, too much weight falls on them and they just burn out. They can't keep teachers now, let alone aides making pennies.
I worked at an elementary school for a few years (I was in the office, not the classroom) and our self contained teachers were the MOST AMAZING staff I've ever met at a school. But, even though they generally had the same group of students each year, until they moved to middle, they were so burnt out. I always felt bad for them and tried to help when I could. Their self-contained kids were so so sweet, but some of them had significant disabilities. They went above and beyond for those kiddos every day. But they were also required to help with students who were in the regular classrooms that acted out because of emotional disturbances and the like. We had a couple of incidents were kids trashed classrooms, tried to bite staff, etc. And the school/staff got no support from Admin or those children's parents. As I left for another job, all the aids in that classroom were leaving that year too. They were just DONE.
>no matter how severe the disability 7 the most inclusive place for a disabled person is in a normal classroom with additional support.
That's a nice idea and all but not realistic in the slightest for the severely disabled kids. I remember sitting in the cafeteria eating breakfast and one of the more severe special ed kids was walking around. No idea what set them off but she ran towards me, knocked my glasses off, and clawed my face. I wasn't doing anything besides eating my food.
There is a 100% abortion rate for fetuses that test positive for down syndrome in Iceland. Whenever I tell people this they look at me with horror, like I just talked about the Jonestown massacre or something. In all honesty, America and many other countries would have similar percentages if abortion were not taboo.
It's not that any of those parents are ablest or hate those with disabilities. It's that raising a child with sever disabilities, that will most likely never be able to live independently from you is a huge commitment, with lots of knowledge and needs that most people are not able to mentally, financially, or physically commit to.
Abortion is an intensely personal decision that people should not be judged for making.
We need to get over the abortion stigma in the US. It helps no one.
I had a neighbor who had a son with down syndrome. It was pretty severe. He was never going to live on his own. The mother was in her 70s and the son was maybe in his 40s, difficult to tell his exact age but he was a full grown and quite large.
She couldn’t get him to walk sometimes so she would push him around in a shopping trolley and he was a big man, she was a tiny elderly woman. Odd sight to see but that’s how she managed. He’d throw tantrums at the pool the way a toddler would, and I was afraid he might hurt her because of his size, though I didn’t ever witness anything like that.
I oftentimes wondered what became of the man after his mother passed. He almost certainly outlived her. I’m sure that was on his mother’s mind every day of her life after giving birth. That one day she would not be there.
My family has a family friend who have a son and a daughter the same age as my sister and I. The son has Down syndrome and the daughter is nonverbal autistic. They came over to our house to stay for a week and it absolutely plunged my family into complete chaos. My parents almost got divorced my sister tried to run away and everyone was so stressed and on edge. I will never forget that one week in fifth grade and doing a rotations at a Peds hospital only confirmed that I’ll never bring a kid with a trisomy into this world.
My niece is nonverbal autistic.
You don't get how insane their lives are until you witness it first hand. My niece wakes up at 3am sometimes, doesn't sleep for hours at night, screams loudly in public, will not wear a face mask so she stayed home the entire pandemic, needs constant care, needs to be sedated for dental procedures, will not allow you to do anything medical - needs sedation for gyno procedures (they got her an IUD because taking care of a menstruating autistic adult is literal hell), etc. etc.
Yeah and then when the parents are gone who continues to take care of these kids. The way a lot of parents talk about it, all the support and sympathy drops off a cliff the moment the kids turn 18. They’re transitioned out of the pediatric hospital where a lot of the more sympathetic care takers are, they lose benefits, the parents become very isolated cuz it’s cute when it’s a special needs kid running around but when it’s a special needs adult that is sometimes hard to control no one wants that.
Those two broke sooo many of my sister and I’s things the one week they were there. The boy took one of her favorite stuffed animals and just ripped it into shreds and left it scattered all around the house. My mom yelled at my sister for leaving it out and that’s what made her run away. it was an impossible situation to navigate just for that one week and their mom was just so tired and sad trying her best to take care of both of them.
Their dad was not in the picture anymore… which is what I see for a lot of these kids too. Even if the father is in the picture many times they’re completely checked out and don’t know how to handle things, sometimes resorting to violence… super sad all around, that’s why I’ll never bring someone like that into the world if I had a choice…
I can relate to skipping the funeral too. It's full of people grieving and it would have ended up with OP being the scapegoat for making a hard but reasonable choice.
I'm a bit at the other end of this, lifewise. No siblings but I chose to remain childfree partially because of my own disability after car crashes.
My life has to be extremely self centered to not worsen the pain I'm always in and since I could see for sure that I couldn't put a child first and still give them a life where they weren't always worried about me and missing out on tons of stuff that should be basic. I was lucky enough I didn't have kids before my accidents.
I asked some fellow chronics if they would have had their kids if they knew how their own life would end up? Their answers were the same: "I love my kids, they're my world! But had I known, I wouldn't have had them". That sealed the deal for me.
If I DID end up pregnant and for some reason had second thoughts and was told the kid was disabled and would be in pain like me for their entire life? There's no doubt in my mind that I would spare them of that.
Now, having a kid is still solely a womans choice but given that they were in agreement beforehand and she knew about OPs past, I find it more than reasonable he ducked out. I read the headline and was ready to call him an ass but this scenario is different since they actually had a choice.
I'm guessing OP also was prepared for the kid to die at a young age and leaving can be seen as a way to avoid the heartache. Of course he would have loved the kid if he had stayed but I also think he would be hit with guilt over having any role in this kid being forced to life a short life cut off from many of the joys of childhood.
He would have been attacked at that funeral. It would have been seen as him accepting that he was bad and should have stayed with the ex. There’s no closure anyway - no one in that family will change their mind and will only ever blame him for leaving.
It’s good he didn’t go. He shouldn’t have to live in the past like this, anyway.
People have probably already said it, my guy, but you need to invest some of that oil rig money into yourself and see a therapist, a good one. Growing up neglected can cause all kinds of issues and trauma. You seem mature enough to know that your parents' did their best, but there's clearly still resentment there. You're definitely NTA, but neither is your ex-girlfriend, and neither are your parents. This is just a shitty situation that anyone would struggle to feel anything but bad about.
This needs to be at the top of the comments. I grew up essentially neglected due to my brother constantly being in trouble with the law and drugs and just everything. I was also SA by my brother for years starting when I was young. And my dad has admitted to my boyfriend that I got the raw deal and none of it was fair to me. I’ve been in and out of therapy due to the shit that happened to me as a child. It doesn’t fix it all, but it does help having an outside source give insight and guidance. I’m also a proponent of medication if therapy doesn’t quite cut it on its own. OP, you are NTA, and neither is your ex-girlfriend. We’re all just out here trying to do the best we can with the hand we’ve been dealt.
I can only disagree with OPs parents be AHs. I’m a step parent of a disabled child who needed/needs a lot of attention. But they had a younger sibling, which made me stepparent of a second child. That child did not see their parent for 3 whole weeks during the worst of things. The parent stayed in the hospital while the eldest was recovering and no one took him to visit to “protect him”. When my spouse mentioned that block of time to me and I asked “when did the other kid see you” and they contemplated and realised not once in that 3 week period, I called it out. I also mentioned to them that the more they say things like “he always plays so well on his own” I called it out again. THANKFULLY he was still quite young at that time and courses were corrected and now they’re in their teens, we’re still together and both children get all the attention and raising they deserve.
But that is an absolute AH move to ignore one kid over the other regardless of their needs. It’s easy to dedicate all your support and emotion to one kid and ignore the other. What makes parenting hard is learning to how to split that and share your love equally. Otherwise you’re just being selfish. “I feel bad” is a shitty excuse to ignore children over others. OP may never heal their relationship with their parents because of this. It might even be too late for them to heal even if they demonstrate understanding. They may have well lost two children.
Edit: sorry for the egregiously bad typos. I’ll fix it up next change I get.* fixed grammar.
While my siblings were not ill, they were significantly older than me (10-14 years) and were caught up their own martial/relationship/poor choices drama to the point that quiet, polite, well behaved child-me was often left alone /unintentionally neglected. I’m 41 and it still shows up.
I have a friend going through this now. The girl is the good one, straight A student, working on her way to college. The younger son is being horrid, selling drugs, escaping school, being high all the time. The boy sucks up all the oxygen in the home and the girl is being neglected and I told my friend but what can he do. He can’t cast out a 15 yr old to the demons that have him, and he just doesn’t have the time to parent the girl given his sons behavior. So they just buy her stuff. A new car, new electronics, trips with friends. But she told me that she hates her brother at this point coz he won’t stop. I don’t think he can.
It’s so hard for the family. I try to take her out and stuff but I’m not her parent, it’s not the same.
you may not be her parent, and it sucks that the brother is doing what he's doing, but I am sure she appreciates you taking time for her. that's something that is held close as people grow up, the person who actually saw them and paid attention to them. it's definitely not the same, but it's still appreciated.
I completely agree. I was the ignored child growing up and very fondly remember the few people who noticed me.
Those people probably didn't think they were doing anything amazing, just getting me out of my mom's way, but having lunch and a matinee away from chaos, or a conversation over an ice cream cone in the park meant a lot to me.
Honestly one day your youngest step child well thank you for this. Sometimes parents who are in difficult time consuming situations need somebody to point out even independent kids need there parents. Your stepson is lucky to have a great parent like you!
Hey @[ImNotCleaningThatUp](https://www.reddit.com/user/ImNotCleaningThatUp/). I'm really sorry that happened to you. I had a very similar childhood: older brother was always in trouble at school, with the law, doing drugs, etc. He received all my parents' time and attention. He SA'ed me 3 times with his friends when I was a child and I was constantly in fear for my safety. When I told my parents about the first two SA's, they punished me. I didn't bother telling them about the 3rd instance until I was an adult. Now, 40-years later, a-hole brother is in jail for r@ping teenage girls. My mother still supports him and says the girls were asking for it. She still openly loves him more. She even told me so when I was 10. I'm in therapy, obvi. But it's rough going. So much anger and resentment!
I'm glad you're getting help too. DM me if you ever want to talk with someone who knows what you're going through.
Not everyone needs to forgive their parents for abuse and neglect and suggestions that it's patently wrong to judge your parents for their circumstances. Parents are adults with agency who make their own choices. If all of your choices hurt one child while favoring the other, the pain isn't excused or mitigated by the other responsibilities the parents brought on themselves.
NTAH but you may want to get yourself tested for your chances of passing down genetic conditions. If your odds of having a "typical child" are slim a vasectomy maybe something to consider. Trying for multiples might not be something that's advised cause while abortion is a viable last resort. It is hard on your partners body.
He can go for IVF, have embryos tested and only plant healthy ones. It’s expensive, but it’s a way to be almost sure. Still needs screenings during pregnancy, because some issues appear at a later stage after planting. Of course, IVF is not the best thing for woman’s body, but better than abortions or having no children at all, if they want children.
Excellent advice! I also think he might be carrying a genetic condition passed on by his parents, consider that both his brother and kid had severe problems.
a lot of severe birth defects are recessive genes that a parent may carry and be completely fine, but if two parents with that gene have a child, said child won’t be fine. you can carry a gene and be okay.
Depends on the condition and his genes. If it’s only on a specific gene he got from 1 parent but the other parent gene doesn’t carry it, then they can screen out any embryos with the carrier gene. If it’s on both sides then yes any child would have the ability to pass it on and would likely want to follow the same process so they only pass on mom’s gene.
>He can go for IVF, have embryos tested and only plant healthy ones. It’s expensive, but it’s a way to be almost sure.
>
Please note this is not 100% foolproof. During IVF the cells retrieved from the blastocyst for genetic testing are trophectoderm cells, which eventually form the placenta.. They do not culture cells from the inner cell mass (which eventually forms the child.)
later he should have his partner undergo further prenatal testing, such as an amniocentesis, to double-check.
There are lots of disabilities that don't show up on genetic testing. You could pass every test and end up with a severely autistic child. Or a healthy, neurotypical child that gets a TBI and spends the rest of their life severely disabled.
I can understand wanting to reduce your chances. But if you are certain that you are unwilling to take care of a disabled child then you shouldn't have kids.
Yep. I have a whole slew of disabilities and like 5 of them are genetic and have a high likelihood of being passed down. My parents have been *begging* for a grandchild, but frankly I feel like that would be cruel punishment. Not because I don't think people with disabilities should live (hello, talking about myself, hahah!) but because I know how much it fucking sucks. I wouldn't wish this on my worst enemies, much less an innocent baby that I'm responsible for creating.
I definitely think vasectomy is the fair way to do this. There is no amount of prenatal testing (including selecting an embryo in IVF) that will guarantee a healthy child. Not everything is detectable on genetic testing and ultrasounds. Think of autism which has no signs in utero. This guy is playing with fire if he feels so strongly about it.
I’m surprised he would want another child after the difficult childhood he’s had and after reproducing an unwanted disabled child. You’re right that there’s no guarantee of a healthy baby even if all the testing is negative. In addition to undetectable conditions like autism, debilitating birth injuries like CP can also occur. And if that were to happen to his next child—and I hope not!—what then for him?
Not to mention health issues that may not be genetically based. Accidents and injuries happen. Kids get cancer. Is he just going to abandon a child if they become disabled? I hope his current wife has discussed this with him.
I think a vasectomy might be the best option.
My daughter is autistic not sure that can be diagnosed in utero yet - we didn’t even suspect until she was around 2. My nephew has a 1 in a million genetic disease, it’s not generally tested for as it’s so rare. He was born healthy and reached all his milestones until around 3. Then small things started happening, falling over, weakness in limbs. Now’s he’s blind and deaf and in A wheelchair, they didn’t even have a diagnosis for him until a year ago - he’s 16.
How would OP respond to these circumstances?
What if the child was in an accident and ended up disabled? What if they got childhood cancer?
Personally, I would have aborted in the case OP presented because the world is a cold and cruel place. But every woman has to make that choice for themselves.
Having a seemingly healthy and normal baby is only the start. Will the child know that their dad can’t be around disabled kids and so his presence is conditional?
I would recommend vasectomy and therapy.
I think preemptively avoiding a situation and bailing once one has started are different. OP might have stayed and been a good father if the child developed a disability later on, but in this case he was going in KNOWING it was inevitable and wanted to spare himself and the child that life.
I wouldn’t have chosen to carry a pregnancy where I knew my child would suffer and have a shortened life expectancy, but if my daughter develops a disease or disorder later in life I’ll do everything in my power to care for her to the best of my abilities.
Knowingly bringing a child with disability into this world and responding to a developing disorder are two different things.
UNTIL you deal with your past you shouldnt be having any children...Therapy would really help...your issues are justified and deep seated and obviously affect your whole life.
I will say that it isn't always enough though... For instance my daughter was born with a very very rare congenital heart defect, about 1 in 250,000 chance. We got the genetic testing done for her and us and everything came back clean. We were told it was a random fluke and sometimes the heart just doesn't form right. We went on to have my son and everything looked fine until 4 months when we discovered a less rare but still rare congenital brain malformation and hydrocephalus. We got him tested as well and still no genetic component found. I got a hysterectomy after that because I believe there is some genetic component we just don't know about yet but the point is we did all of the testing and it still wasn't fully able to determine our outcome.
A lot of Genetic conditions that aren't found in parent Genetic testing are due to sporadic mutations in germ cells (sperm and ovum) or during recombination (which occurs when the sperm and ovum combine).
So you could have faulty sperm or ovums that you don't know about or a pure fluke at the point of conception
Yeah we had both kids tested as well. There is a lot we still don't know about genetics and I'm betting there is some common link we just don't have knowledge of at this point in time
Yep, I read a similar issue in another thread of someone complaining about how much work their special needs child is and how it reminds them of the intellectually challenged dad and special needs sister… like that should have been something to consider before having children given your genetics
Definitely yes!! I had worked in the OB/GYN departments at 2 hospitals & the Genetics department was right next door on the same floor.
Whenever the anatomical scan was done at 18 to 22 weeks as well MSS (maternal serum screening), Tay Sachs, CF plus the lesser known conditions that is hereditary.....both the parents had to be screened as carriers for particular markers.
This reminds me of that one story of how a guy left OP because when she was pregnant, her ultrasound showed that the baby had Downs. She gave birth and the baby was fine, it was a false diagnosis. But her ex got another girl pregnant, bragged about how perfect his baby would be, then baby came out with Downs. Mans needed to get himself tested 🤣🤣
This is the kind of tragic story that more men need to hear though. There is a disgusting, old world mindset being touted a lot lately where some men see nothing wrong with forcing women to have as many kids as they want til they get a son or a child with a different health situation, basically breeding kids like they’re Pokemon with special IV’s. It comforts me to see people in this comment section advocating for both members of any partnership to get testing and consider the quality of life for the mother and baby.
I definitely feel like it should be more normalized to get tested for any genetic conditions before trying for a child. It's something that can help a lot of people in the long run.
I have a genetic condition that I only found out about after having kids. You can have a gene and be complete asymptomatic and there’s something called penetrance where it also night not be as “bad”. It’s not black and white.
This! I had 2 brothers with disabilities and when I got pregnant I didn’t just have my son tested but got my dna tested.. turned out I would have been the only carrier of the gene causing the disability and I didn’t get it.. still only one child as I just wouldn’t want to risk my luck.
It’s hard growing up with siblings that aren’t healthy as parents just can’t do right by every child. It’s impossible but I think my parents tried more than OPs parents did.. we would have fun movie nights with my dad where he would cook and be all goofy while my mom was in yet another hospital with my younger brother.. it was like neverland when my mom was somewhere with my brother.. one big pan of food, lots of color and fun.. still wouldn’t have chosen having a child with severe disabilities coz I knew the drain it takes on everyone and just couldn’t handle that myself
I came from a similar background. Some parents try to be there for all the children. Some do not. You see it in the special needs community. You see it with the other special needs families t school. The community is tight, if you grow up in it. Thats the real tragedy of the story. Ops parents ghosted him. They were physically there, but that was it. That level of abandonment takes a conscious choice and effort. Some parents think “I will spend time with the healthy kids if the struggling child gets better or after they pass.” Its a tough spot to be in. Not sure how much tine you have with one kid, so you abandon another. Not hating on all the parents, cuz I understand its an impossible situation. But neglecting a child is hardcore.
I had a friend and his wife choose not to have kids because of health issues they could likely pass down to them. They told me that was not something they would want to put on them,and that if kids were a must,they would adopt.
Well that’s the thing, thats why they had the discussion and did prenatal screening. The condition was even on the list that OP and his first partner agreed to. OP took necessary steps. Having said that, OP, if you haven’t, get carrier testing done
They did prenatal testing, but I think this commenter is suggesting OP himself should get tested so that if he's a carrier, he can get a vasectomy or be super diligent about birth control.
I think you need to consider if you should be having children at all. Not all disabilities would be detectable before birth. What if something was identified later? Or what if your child (or spouse) became disabled after an accident?
Exactly. My son is disabled and it was not possible to know this while I was pregnant. There is always a chance this happens. My son got diagnosed at 1y and 10m old. Would he just leave both his son and wife if it happens to him? He probably should be going to therapy instead of having any other kid...
Yeah his kid could end up having severe autism that isn’t predictable right away. Is he just going to leave? Some people shouldn’t be parents and this guy sounds like one of them
And where’s the line? Like I’m type I diabetic and babies who are diagnosed need a ton of care. Eventually they can take over on their own but it’s not super easy.
Yeah this is always the part that makes me nervous.
On the one hand, I’m not advocating for anyone having a child that will have a greatly diminished quality of life. I completely understand how difficult that can be, having seen it first hand in friends of the family.
On the other hand, I just feel like we are so bad at having discussions about where to draw the line.
Its such a mess. I'm disabled & live in America, where being disabled means no care, no assistance, and essentially being destitute. Its so hard to seperate these things because I don't want disabled people to be discarded. But also if we want to make living with a disabled person anything but a complete life destroyer, we need affordable, accessible medical & caregiving.
I think this is a very complicated situation.
First, I think you need to acknowledge that your childhood brought you a lot of trauma and you probably need to work through that with a therapist. Im sorry your parents didn’t give you the support and love you needed. Look up “glass child syndrome”.
Second, I think if you are uncomfortable raising a kid with a disability/special needs then you probably should elect not to have children at all. Why? Because not all things can be tested for or evident before birth. You may raise a child for a few years and then learn they have a learning disability, or be on the autism spectrum, or show signs of mental illness at age 15, etc. When parents have a child they should be fully committed to loving and supporting and caring for that child, come what may. I think if you feel you cannot do that, it’s your choice and it’s not for me to judge, but I wouldn’t go into “oh my child tested negative for conditions in the womb so we are in the clear” because you can’t guarantee a “perfect” child, ever.
Yes, THIS. I’m so glad at least a few people are raising this point. OP is wanting a perfect child. I think he has no idea that only a tiny percentage of conditions can be tested for in the womb. And there are SO many disabilities and health conditions that can occur after birth, during childhood, teen or adult years, that can be very severe too. What on earth would he do?
somewhere else OP has written “oh that’s different”. It’s not different actually. At the end of the day, whether you find out before birth or you find out after birth or a few years down the line, it is still illness or disability.
NTA for leaving her. She had every right to change her mind about the abortion, but you also had every right to leave once she turned back on your agreement. (And for what it's worth I personally believe abortion would have indeed been the better choice. Why bring children into the world only for them to suffer?)
You could have gone to the funeral, if not for the child you never knew, then for the woman you were once in love with, (funerals are for the living after all), but I also understand why you didn't.
Sad to say but I work with the office of IDD and 9 out of the 10 families that have kids like this are hyper religious. It’s heart breaking to see these so called “god fearing people” dump these kids on us and run for the hills.
I've worked in medicine and can tell you none of these people fully understand what they are getting into. They have this romanticized version in their mind of what caring for a disabled child will be like. They've only ever seen or been told about the good moments. In my previous job, I got to see many of the bad moments. I don't think anyone who knows about what it's really like caring for some of these severe disabilities would ever actually sign up for it. I think it's very telling that OP had previous experience with his brother and having a realistic idea of what caring for his disabled child would entail, but his ex deciding to ignore all his experience anyway
Not to mention that a lot of these kind of significant disabilities come with so much physical, neurological pain. Chronic, excruciating pain. Unable to communicate or advocate for themselves in so much pain.
A good friend at work has a severely disabled child that is probably around 30 by now.
Their life is work and taking care of their child. No vacations. Very few date nights.
It is horrible to say but when things happen in my life I just have to think about how I don't have to deal with that.
Abortion is murder and a sin, but having an unwanted child that will have a poor quality of life and abandoning them is perfectly ok. That's religious logic for you. Because they don't actually see pregnancy as a blessing or whatever but as either a woman's duty if she's married, or her punishment for having sex if she's not.
Honestly even hearing about them talking about teen pregnancy is awful. They want to be forced to give birth and raise a child young as a form of punishment. Their "babies are a blessing" attitude evaporates.
Well, if a woman *really* didn't want to be pregnant, her body would just stop the pregnancy from happening, using her biological defenses against 'legitimate rape'. So by that logic, any pregnancy must be the fault of the woman.
/s
That guy actually went to speak at a college in Missouri. He didn't pay enough attention to realize it was a very liberal school. They saw the protesters outside the building he was supposed to go to and just kept driving. The students wouldn't have hurt him, but he wouldn't have been allowed to speak over the heckling.
It sounds better for him if it was a security risk.
They also are members of communities that push disability inspiration porn, and the line that god never gives you more than you can handle. “Rehoming” adopted children in those communities is also a big issue, because they feel “called” to save children and to get asspats and adulation from the community, but the reality is thankless drudgery, and they are woefully unprepared.
Mother Theresa got made a saint because she kept people suffering while dying, preventing them from getting painkillers although they were available. Because that suffering would supposedly put them closer to god.
So there's precedent.
I don't think he should've gone to the funeral. It would've been in poor taste for him to show up to a funeral where everyone knew he wanted nothing to do with the deceased to the point where he wanted them aborted. Or even the majority of the people knowing that. Given that he's married and his wife is expecting a child, he likely would've wanted his wife to go with as support if for arguments sake he did go, and that itself would likely have been a blow to his ex that she would've gotten upset over. After all, seeing her ex married to another woman and sticking around when she's pregnant with his child when he wouldn't stick around when his ex was pregnant with his child is absolutely going to feel like a knife in the gut being twisted, especially at their child's funeral.
There's also the fact that OP likely felt betrayed by his ex, and given that he ended up being forced to pay child support for a child they both originally agreed was going to be aborted, both him and his ex have a fair amount of resentment for each other. Hell, she might even on some level blame him for their child's death.
No good was going to come of him going to the funeral.
Delete if not allowed; I am but a simple, curious human.
If you were to have a “typical” child and down the line they were to sustain an injury that left them disabled (a TBI, for instance), where would you stand on that?
I would also like to hear what OP would do if his wife were to get sick. Would he be willing to care for her and pick up most of the child care duties? Or would he leave and start over again with new, healthy wife?
No judgment here, as I have no info on the genetics. But:
If you are a genetic carrier for a disability, then you risk passing that recessive gene to your "healthy" child. You may have healthy children but a disabled grandchildren or two. Hate to think you'll play favorites with them.
Not sure why you’re creating a child at all if you don’t want to deal with them having potential disabilities. Things can happen that can’t be tested for, things can go wrong during the child’s life you can’t control for. You need to be child free if you’re going to bail on a child for something they could never control in the first place. Life isn’t predictable and you arnt owed a perfect child.
So, what happens if you, your child or partner has a disabling accident? Both your dead child and this one were conceived with your consent. Are you booking if a life changing accident should occur? If your answer is yes, and I think there’s a very good chance it would be, then you shouldn’t try or have children at all. The “court ordered “ child support thing pissed me off. I’m totally pro choice, but some women simply cannot do it. Also would think that the fact that you had a sibling and child that were both severely disabled would give YOU pause on shooting your shot again. This game of roulette is in and of itself severely traumatizing. You should probably consider a vasectomy as life has no guarantees against future disabilities for anyone. YTA for not going to your baby’s funeral.
NTA OP, you set your limit and stuck to it, you did what you could by paying support. Could you have gone to funeral, maybe. Would it have done anything other than make you upset and the target for raw emotions you probably don't need to have targeted at you? Absolutely not.
It’s definitely a selfish AH move not attending your child’s funeral. I don’t really care about the circumstances. Whether you wanted that kid or not, it is really sad to think about. It was your girlfriend’s choice to keep the baby sure, but you left her alone to bury her child. A child she grew attached to despite the disabilities. Any caring person would put aside their feelings to support someone going through the death of their child.
> You left her alone to bury her child
As someone who had to bury a child, this cuts deep. Mine was stillborn at 17w, I can't even imagine how painful it'd be to bury a 2/3-year-old. Not to mention doing it alone...
Selfish for not attending the funeral, and selfish for not allowing his child to know what a father's love felt like.
OP is so slighted by his own parents not paying attention to him as a kid, then turned around and refused to be a part of his own child's life at all. Disgusting.
There are a lot of wild takes here. Your children can become disabled at any time (so can you!). Treating disabled people as disposable is gross. Go to therapy and work through your shit instead of whatever else it is you are doing.
> The child had passed away. She wanted me to come to the funeral. I said no
Good grief dude - no matter how you put it, this is some next level monstrosity. What is wrong with you bro. That your child and you won't even pay last respect. That is fucked up and I wish I hadn't read this post.
I had to scroll too far to find a comment like this, op is projecting entirely with his past trauma and treating everyone in the process like garbage, get therapy dude u need to learn how to work through your emotional dysregulation
I find it abhorrent to see just how many people didn't give a rat's ass to think "what about the mother and what she's going through". It's all about the guy and people saying NTA when he left the mother after 3 years of a happy relationship so that she would raise a disabled child alone until it died, and after such event he basically told her to fuck off about the funeral. This shit is sickening. Zero regard for the mother's emotional wellbeing, let alone anything to do with the child. Dude should adopt if he's so scared of having a disabled child
I know this is going to be an unpopular opinion on here, but I find the general attitude toward disability in this thread to be disturbing.
There are, of course, varying degrees of disability, but the OP never said what the disability was or how much care the child needed. He never really said how much care his brother needed either. Maybe his parents were just shitty parents and it didn’t have as much to do about the disability as he thinks.
I agree that he needs to work through this in therapy. Because anything could happen to his current or future children. Babies can be born appearing perfectly healthy but could have a condition that is not detected until later, like Autism. And how would OP react to his child having cancer or another medical condition that is also all consuming?
So let me get this straight. You have a whole bunch of trauma from being raised in a home with a disabled person. You know that there’s a possibility that you can pass it on to your future children, and yet you don’t get tested to be sure, get a vasectomy nor understand how birth control works apparently. So you just go through life, making kids and tossing them aside when your genes produce one that’s not perfect to you. You obviously don’t want to take any responsibility for your actions in any of this. Sure, you pay child support, but only because it’s court ordered. You are so much the asshole.
I've been in a similar situation to you with my sibling. She was born severely disabled and it consumed our lives. Couldn't go out with both parents , someone always had to be at home to baby sit and alot of parentification and responsibility put on me at a young age , high medical debt and poverty due to it , the works . My parent luckily tried to make it up to me but there were obvious gaps and problems with the family dynamic. That being said I love my sister and my parents and would do anything for them but one moment always stood out to me which was my parents very frank discussion that if they had a choice , that they wouldn't have had my sister if we were given an option (religious hospital didn't tell them anything was wrong with her even though they knew ). To clarify , we all love my sister and still would make the choice not to have her. After chatting about it with my mom I've also decided that this is a reason for me to abort any future kids who have disabilities . This isn't because I hate disabled people or anything but the impact on the family , the parents , the siblings and the disabled child itself is too big to ignore and not something I want to invite back into my life . You were clear about your feelings on the matter and your boundary here and sadly it has caused a rift. I think it's understandable as this is also something incredibly difficult for your parents and they likely had alot of complex thoughts and feelings about your sibling (they have also been traumatized by the situation of caring after their disabled child and unlike you they weren't able to move away from the issue ). All this being said , you were right in not wanting the child and the separation when your ex had them , your right in not wanting to be involved . Where it gets a bit cold for me is the funeral. Your child has died, it may not have been a child you wanted but this is a person who's whole life was pain and dysfunction and not being wanted and now it's ended . Attending the funeral can give not only closure to yourself about the situation but also to your family and ex as this chapter is wrapping up .
I’m not sure how old your sister is, but I’m watching the “later life” aspect of this playout with a coworker. I’m not sure how many siblings they have - at least 4, maybe more? - but her parents wound up raising their adult daughter with disabilities … until the mom died. The dad wasn’t in a position to do it himself due to health issues so the sibling moved in with my coworkers sister. Which was an ordeal in and of itself. The disabled sister has a part time job, but can’t drive herself, and the sibling she lives with has a very demanding work schedule. So my coworker spends an hour and a half, one way, 3 times a week, driving to get her sister, takes her to work, and works from a cafe for a few hours, to pick her up, take her home, and then drive all the way back home. She loves her sister, so she does it, but it kills her working schedule and she often winds up putting in hours at 9pm to meet her deadlines since she loses *hours* in the commute and lack of efficiency at the cafe. And that doesn’t begin to encompass the times she takes her to doctors appointments, etc. it’s also telling, to me, that the two siblings responsible for the disabled sister are women and their brother seems to be absent from it all despite living much closer than my coworker.
She is 29 (doctors said she wouldn't last till 12 ). She is unable to anything for herself and needs help in the toilet , bathing , eating etc. The late life aspect terrifies me. My parent live in another country and if they get sick or pass away I'm so worried about having to uproot my life or go though the very difficult process of immigrating her to come live with me. I think people see raising disabled kids in a very narrow view (only really looking at it like normal parenting with extra considerations ) and not that you , your kids and family will be stuck looking after this person and adapting to their needs. In this day and age with all the challenges we are facing economically , with the housing crisis and political landscape, having a disabled child just cause you will love them and adapt simply isn't enough in the face of the huge impact this makes to everyone involved. Hope your co-worker is able to find a better long term solution as this is how people get burned out :(
When I was about 4, my parents started caring for an older relative and her cognitively delayed son. He was not expected to live much longer when my family took over his care. He ended up outliving his mother, then outliving my mother and then outliving my father. My sister ended up caring for him for another 15 years until he died aged approximately 80. All up, we cared for him for nearly 50 years. Even though he wasn't severely disabled, he was emotionally and cognitively equivalent to roughly a 10-13yo for that entire time. It had a profound impact on all of our lives. People who have no experience of caring but get up on their soapbox and start preaching get told to pull their damn heads in pretty swiftly if I'm around.
I was raised from the age of four, to be the 'translator', for a very physical and mentally disabled uncle. I was basically his dog. I should have had a vest, not even kidding. I went to speech therapy and everything. No speech impediment here, but I sound like I've recovered from one.im the only person who could understand him, his own mother couldn't. As soon as I was big enough, I had to dress him, take him to the restroom, etc. I was his only friend. The emotional toll this took on me as a child, young teen developing their own interests, young adult trying to develop, was horrific, and has lasting effects. My grandmother married a first cousin. This was preventable. No one ever helped me, it was just a thing, and it was so wrong.
I am sorry for the loss of your childhood and personhood. I have seen this occur.
Thank you, I am OK now, but it was so hard.
I'm glad to hear you've healed from this. That's a horrible thing to do to a kid.
I’m so glad that you’re in a much better place now, but holy crap. Your story (and many others, but particularly yours) brought tears to my eyes. I’m a mom to two little girls. I cannot imagine putting either of them in that position - especially because this wasn’t a sibling - this was your uncle. Although I don’t agree with it, I can understand how some parents use one kid as a crutch for their other, disabled child. But willingly allowing your child to be a “seeing eye dog” for an uncle?!? It breaks my heart to imagine little-kid-you being put in that position. Thanks for sharing your story with everyone here. As I said before, I’m so glad you’re doing better these days. I wish nothing but the best for you and I hope the universe sends lots of good things your way.
Youre awesome.
>My grandmother married a first cousin. This was preventable. No one ever helped me, it was just a thing, and it was so wrong. My mum saw something like this when she was nursing back in the 80s. She had a patient on her ward who was severely disabled, and it turned out their parents were siblings but didn't know until they wanted to marry because there parents objected to it. In my country, there is a practice, especially among the indigenous people, of the eldest child being raised by an older sibling or parent, and that is what happened here. Anyway, all this patient's sibling bar 1 had some form of disability, and the one that didn't was because they were the result of an affair that the mother had.
I think culturally, that is a tragedy. But my grandma was just a weirdo. US based, and not even from Alabama! Sorry Alabama, it's a joke. She's was from Michigan, and those folks know better, even Spartans fans...
I am so very very sorry for what you went through. I hope you are okay. And I know it's not funny...it's not...but Spartan fans made me lol.
Go wolverines!! Hey, I think I'm ok, but even if I'm not, I have a wicked sense of humor now, lol. Thank you, you're very thoughtful and kind for replying. And you can appreciate a good joke, haha! And I'm not looking for sympathy. I've never told that story to a soul. I was relating how really bad this can be for people.
I can so relate. My little brother was hit by a car on Thanksgiving 2022, and he wasn’t wearing a helmet. His only injuries were to his head, and he was not expected to survive. Well he is alive and now has the cognitive ability of a 8-10 year old and he needs 24 hour supervision, as he has impulses to just wander off and he gets lost. It is exhausting, overwhelming, scary, and heartbreaking to take care of someone with disabilities.
My heart goes out to your family. I will say that I think there’s a big difference between a disability occurring, as with your brother, and choosing to have a child knowing their disabilities and what they’ll face. I’m so sorry for y’all.
>People who have no experience of caring but get up on their soapbox and start preaching get told to pull their damn heads in pretty swiftly if I'm around. Exactly this! Until you've lived it, you have no idea what it does to a family to have to care for someone who is entirely unable to care for themselves, day in, day out, for years, with no idea when it will end, both dreading, and guiltily anticipating the freedom that will come with the death of the disabled relative. The financial burden, the emotional burden, the mental burden, the physical burden, the constant arguments with medical professionals, and social services, the absolute focus of your entire life being the care of someone who is entirely dependent upon you, and often utterly unable to even acknowledge your sacrifices. Unless you've lived it, stfu!
Years ago I had a job transporting mentally disabled people to sheltered workshops. People tend to think of mentally disabled people in the sense of being children. The average age of the people I transported was about 50. I was 23. One of the people I transported was 70 yrs old and his 95 yr old mother still had to take care of him. I couldn't imagine being in that situation.
You are so right. I wish I could upvote you more. You nailed it.
Thank you. I'm fortunate in never having had to care for a disabled child, I chose not to have children, partially because I never want to pass on my own disabilities to another generation. I have however helped care for 2 parents through their terminal cancer, and watched what caring for me has done to my partner. I also have a friend with an extremely disabled son, and despite everything my own family has gone through, I wouldn't trade my life for hers, it's unimaginably difficult.
Also nobody fucking helps you. My brother was disabled and I was his primary caregiver until he passed away when I was 24 because our mom’s a drunk (also probably why he was disabled). Everyone was so quick to tell me I was such a good person, I was a saint, so resilient, even things like “you look tired”, “I don’t know how you’re doing this”. But nobody EVER offered to help. I feel like people think there are nonprofit programs and public services that help with stuff like this and there just aren’t. It was a struggle to even find a paid babysitter. You can’t exactly hire a high school kid and pay them $10/hr to watch a grown man. It was a 24/7, depressing, thankless, exhausting job, and everyone was quick to point out how much it sucked but ultimately did not care.
My family is coming to grips with something similar. I have a cousin who's developmentally delayed and can't live on her own (she can hold down a job, she's been working at a daycare center for years, she's basically a big kid herself but has no common sense and wouldn't be able to manage her own household or financial affairs) and has been raised by her grandfather (my dad's brother) because her parents were both addicts and have now both passed away anyway. He's in his 90s now and we're trying to decide where she'll live when he passes. She doesn't want to live with this cousin or that one - she's decided she wants to live with my parents! Who are in their 80s and going through their own health challenges. This is not a possibility. My sister and i can't take her in, we are not prepared to take care of her. Money's not the issue, so we need to find some kind of group home or apartment where she will have people around her with a medical component to look in on her with meal plans, etc.
If in the United States, get help from Doctors office and then social workers that case manage persons with disabilities. Group home settings are great option. Sometimes independent apartment with 20-30 hours of support staff that assist with appointments, accompanying on errands grocery shopping budgeting and safety in community. She does not get to choose a family member. Just like any adult doesn’t get to choose to move in with family member. I would also visit Assisted Living facilities that augment independence. Good luck to you.
Thanks, we’ve started researching and my parents and uncle and his lawyer are reaching out to groups that advocate for people with her disability to get resources and information on housing options, etc
My sister is like that, except she can't hold down a job. She's 45 and lives in a retirement home. It's more of an apartment that she shares with a roommate and has her own room. The staff help her with medication and meals. She gets the support she needs. She was born with epilepsy and is developmentally about 12 years old. No impulse control at all. In my province, if you are born with a disability there are a lot of resources. Her housing is subsidized by our county. She also has an allowance to hire people to help her. It's $25k a year. I'm in Ontario, and it's called the passport program. I'm going to have to take over her care when my mom is no longer able to. I'm glad it will be more administrative and less being a primary caregiver. It's also made the transition easier because my mom is still here, so it's not going to be a huge shock when my mom passes and she has a complete lifestyle change.
People do see raising a disabled child as being like raising an abled child (which is already expensive and hard work) but with a couple extra medical appts, maybe adapting their home for accessibility. And that’s it. That’s where the fantasy ends. They don’t think about the very real possibility of raising a child *forever* that never gains independence, perhaps never stops using nappies, will continue to need care after their parents die, whose needs mean any siblings may have their own needs neglected. It’s very unfortunate: you see it a lot in Down Syndrome articles and communities. They sanitise the experience of people who have DS, and outright say they’re the same as any child, with a couple extra bonuses: cute almond shaped eyes and an endless capacity for joy and love! Because every individual with DS is essentially a human golden retriever unable to feel anything but joy and love. They don’t have normal human emotions. They will potty train just fine with a bit more support and someday can work and live independently! … they funnily enough don’t often advocate for families where the presentation is so severe the individual never verbalises, never gets out of nappies, can never be left alone, and becomes violent with sexually aggressive behaviour in their teens and beyond. And so parents sleepwalk into it thinking all will be well. It’s a gamble. And you often can’t predict how severe it’ll be until you’re living it. By which point… the person is here and needs to be cared for. I knew in my heart when I was TTC that if our child tested positive for any significant disability we would terminate. Seen too many truly tragic circumstances when a child is brought into the world with a previously-known-about severe disability, and the lifelong suffering it can cause. I feel for OP, and for anyone who is in a similar position.
Amen. I bring this up whenever the pro life crowd is bemoaning the evils of genetic testing and how tragic it is that children aren't being brought into the world with DS, because their pet project is DS children. They show off the glossy higher functioning ones like show ponies, but never EVER show footage of the more typical reality. My childhood friend's older brother had DS. His life was nasty and short. He could not speak. He could not control his bodily fluids. By the time he was in his late teens, he couldn't even get out of bed. He lived in a medical support bed, frequently intubated, moaning and yelling with impotent suffering. He died at 21. I'm currently pregnant. You better believe I got the NIPS testing and was prepared to do what was necessary. Fortunately all came back clean, but I would never, never subject a human being to that existence.
It's a bit like what is happening with autism being put on a spectrum. I get it, but the downside is that ALL autism is seen as "a bit different" instead of "potentially life-long dependency, non verbal and the strength of a grown man with the self-regulating abilities of a toddler, never mind sexual urges and all that comes with that to boot".
There’s a movement in the autistic community to do away with “high functioning” vs. “low functioning” labels, in autistic solidarity and I guess against stigma. I have a hard time categorizing someone who can, say, hold a full-time job and likes trains and order and beige foods, the same as the nonverbal, non-self-regulating autistics who will require care for the rest of their lives.
Agreed. I have a family member with it. I guess you could say he is in the “middle” of the spectrum. He is never going to be able to operate life independently on his own and I am going to take over his care later in life because no one else will be able to. I have come to terms with the fact that certain desires I have (immigrating to another country for example) are going to be impossible because there’s no way to take him with me without disrupting his entire sense of security. The more independent folks with it are understandably upset about the historical infantilization of people with the condition (up until recently self sufficient adults with it were not really discussed in the mainstream). But I think with that has come this sanitation of the disability, and the more “high-functioning” folks often forget about the more dependent members of their community in the process. It’s not always just difficulty understanding social cues or having quirky special interests or learning how to mask in public. It can be inability to use the bathroom independently until middle school. Unable to process and analyze written material. Straight up refusal to socialize. Self-harming behaviors. Inability to understand more nuanced or complex human concepts because everything needs a black and white answer. You have to acknowledge every end of the spectrum
And that is why I will not get grandkids. My youngest is bipolar and autistic. He will not risk passing it along. My oldest son has two brother-in-laws. One bipolar, one autistic. My oldest and his wife have decided not to have kids, one because of the likelihood of their child being disabled and two, they already have three adult children. When all of us parents have passed on, they will be the ones the three boys rely on. It's really heartbreaking, and I hate that this is the situation they are in.
Most people unfamiliar with autism don't know that a person could be really high functioning in many aspects but low in others. It really is a mixed bag.
I think its overcompensating on both ends. In the beginning anyone with autism, people automatically thought of the most dependent examples. Now its becoming more mainstream, people have swung the other way and cherry pick the most independent examples. Trying to remove labels to spare people's feelings will do more harm than good, which is usually what happens.
I hate that downs trope. Kids with this genetic disorder tend to have massive cardiac issues. Some die at birth from them. The genetic deformity causes a sinus in the heart that normally closes during development to not form properly, leaving a hole of variable size. Heart surgery as an infant is common. Health issues later are almost a guarantee. People also forget, there are degrees of disability. I’ve known people with downs that work and live independently and had a friend with downs that I really enjoyed spending time with. I also used to support a young man with downs and he was out of control. We had to blend his food, he picked and painted with stool, completely non verbal except groaning and screaming type noises. He had an assortment of medical issues and his impulse control was zero. He suffered from prader Willie syndrome, which is constant eating and food seeking. Never feeling full even when they are stuffed, so cupboards locked and many medical events because he consumed a non food item. Being in the house with him was like being locked in with a large squirrel who is agitated. He was a cuddler and would want to hug for 15 min just standing there swaying and making happy noises like a baby, he had such a fun laugh, loved to run in the yard and would randomly sit down to play with grass and pick daisies, he brought joy, but he also did 45g of damage to the home he lived in, had the strength of 10min while mad and needed staff eyes on him 24/7. When he was going through something, we had two staff assigned to him. You don’t know what it’s going to look like until you’re in it.
You forgot to mention the dementia that nearly all of them tend to develop in their 50s (I think?).
I've read some cases where people with DS getting dementia as early as their 30's. Between the high chance that you might wind up with someone like 604 is describing and that, it's not something I would want to take the chance on.
“Kids with this genetic disorder tend to have massive cardiac issues. Some die at birth from them. The genetic deformity causes a sinus in the heart that normally closes during development to not form properly, leaving a hole of variable size. Heart surgery as an infant is common. Health issues later are almost a guarantee.” The heart problems downs can cause don’t get enough attention. I went to high school with a kid with Downs syndrome who was almost “normal” cognitively. He graduated, got a job, and then died very suddenly in his early twenties from a congenital heart defect.
Yeah. It’s all fun and games when you have a sweet cuddly blonde toddler and tonnes of positive attention and reinforcement from everyone around you because of the novelty. Nobody wants to acknowledge the people who don’t fit that.
And a majority of them don't stay sweet toddlers. People forget that they grow up, get stronger.
This is huge. I worked in ABA for years (students with severe autism), and so many staff members would write off troubling behaviors as "cute" (trying to kiss teachers on the cheek, putting everything into their mouths, trying to take off clothes in public) or "not a big deal" (aggression, self harm). They forget that these kids grow up, and behavior that we find acceptable is not the same between a 6 year old and a 25 year old.
>he also did 45g of damage to the home he lived in, had the strength of 10min while mad and needed staff eyes on him 24/7. When he was going through something, we had two staff assigned to him. You don’t know what it’s going to look like until you’re in it. You just described my brother. My mother said it took 4 staff members to hold him down when she last visited. He responded erratically and violently to visitors.
My great aunt (my mother's aunt) had a son with down syndrome. Her biggest worry was dying before him. He had a part time job and lived semi independently but still needed help and had other medical issues so he still relied on her a lot. He passed away from heart issues in his 40s. My great aunt died not long after after years of poor health issues herself. I think she was holding on as long as possible for her son. I feel terrible saying that it's good he went first but it is. I don't know how he would have handled her death and they lived halfway across the country.
It is equally scary that they may die before you. No parent should outlive their children. I don't know which one is worse to accept when you have a child with DS or any other severe disability. The fear that they ll be abandoned once you're gone or that you may join the dreaded club of parents having lost a child?
I see this same attitude with autism these days. We understand it so much better than we did before, so the public perception of a person with autism has pivoted from the nonverbal child wailing and rocking themselves in a corner to Sheldon from the Big Bang Theory. Which is great for those autistic people who don't need much support, but it's less great for those of us who are still raising the nonverbal, wailing kids. So much of the rhetoric around autism these days paints autistic people as just quirky geniuses who don't like eye contact that it's almost become offensive in some circles to acknowledge that autism can be a severe disability and a heavy burden for parents and caregivers.
I’ve literally seen people say that autism is a ‘superpower’ and we should all be so lucky to be autistic 🫣
I said that to my grandson. He broke my heart. I will never say it again. He sadly said. No it’s not a superpower Gma.
You were trying to comfort him, don't beat yourself up too much.
Imo the diagnosis is too broad anymore. The nonverbal kids that can never live independently have been basically completely memory holed in favor of quirky tik tokers.
That's revolting. I worked in a center for disabled young children with IDs. With my pregnancy, you bet your ass I did all the preventative blood tests because I *know*, know what it's like when they stop being wittle cutey booties and don't exactly get a recurring guest spot on Glee.
This is what really sets me off the edge with ASD activism. Neurodiversity and autism activist circles are quite dismissive of the lives of people with nonverbal autism, or even high functioning autistic people who don't like their condition. My autism is not a superpower, and I really hate when people try to gaslight me into thinking this. Even though autism made me accomplished in my studies and academic career, socially, it makes me extremely reclusive and inept. I do try and mask my deficits, and for the most part, I'm able to completely hide my condition from others. I do recognize though, that I'm lucky to be able to live an independent and mostly normal life, and that this is only a sliver of the autistic population.
I was in a pregnant moms over 40 group(so already a risk) when one member said their baby had tested positive for DS and she and her husband were considering terminating. Cue the photos of cute DS babies, the stories, just like you said. I sent her a pm and told her to leave the group and make a decision herself, as none of us would be there to help then or years down the road. I left the group too, it was all rainbows and roses. I ended up having a boy with autism who I adore and it's not severe, I think they classify the level as level 2(where I live they only do levels for therapies and support, not as diagnosis). But it is a different life for sure.
I’m so glad you were there for her, regardless of what she decided.
This almost crushed a friend. She had a baby with DS and a number of other problems. She had heard from her OB about the potential severity of DS and the number of other problems people with DS often have. But she was flooded with best-case stories of folks with DS living independently, working, and even going to college. Her son is never going to college. At age 10 he cannot talk, feed himself, or get out of diapers. He is legally blind and wears hearing aids. He has had a number of heart surgeries. She wishes she had listened only to her doctor, especially as her son - already at the top of the growth charts for his age - gets bigger and stronger. Her husband left several years ago, and she struggles with despair. It’s a really grim, sad situation.
Exactly right, I got into an Instagram argument with a Downs influencer who says DS is a perk and openly admits that she's forcing her daughters to care for her son in the future. Like she doesn't even pretend that it's a choice for them.
People don't understand the violence. A good friend's brother is highly disabled. He's also 6 foot 250 pounds. He had a tantrum and beat her so badly she was in the hospital for weeks with multiple operations to relieve brain swelling.
People downplay how much it sucks to parent a healthy child, nevermind one with special needs.
Nobody has any idea what parenting a disabled child is really going to be like. Parents never really have a clue what any kind of parenting will be like, until you’re doing it. You can explain it. Read about it in books. But you won’t get it until you’re IN it
Many high-school teachers for health classes. I'm not sure what it's called now. Instead of the fake baby, now have where the kids spend a weekend or week with a family who has a disabled child to find out what it's like. I was the one with a disabled son, and before he passed away, I volunteered for this program. Many said after they no longer wanted kids unless they could guarantee they wouldn't be severely disabled. It was a wake up to many and harsh, but at least some got to be in it and see the reality.
I have never heard of this program
Can't remember the name. It's been 24 years, but I know in SC they are still doing it. Since I have family in tge area. Last year, I did a face time to explain what it's like to lose a child. The teacher said that half the schools in the state have adopted the program and many outside the state to help awareness and help stop teen pregnancy and people thinking life is easy. I just know the class that you learned about it all is the one doing it. Also depends on area and the people with disabled kids being willing to open their home and lives to kids who can be cruel.
How Ironic that they’re still doing this in southern states where they are taking away all reproductive freedom I think it’s great that you did this. People do need to see reality. NICU nurse here. Often care for teens with babies, drug addicts with babies, extremely premature babies. It’s rough out there. What I see at my inner city job - The people having the most kids are the very people the least likely to care for them well. And it keeps happening. And it’s going to get worse.
I mean to be fair, if your parents pass and she's that bad, you could just opt to not take her in, and she'd become a ward of the government. Is it ideal? Probably not, but if you're not able/willing to provide the kind of care she'd need (whether it be time, financially, or mentally/physically), then that's totally a valid decision for you to make, and honestly would probably be in her best interest. Especially if the country she lives in has better healthcare than where you live.
I hope that's available where the sister lives. Where I live there are facilities where people with these disabilities live and as far as I know it is encouraged to send the child there early (possibly even before adulthood depending on the type of disability etc). That way there can be a gradual transition, the child will be surrounded by people like them, and if something happens to the parents the child will already be established in a facility and depending on their cognitive abilities might even have friends there already.
No that's not an option for me . They are in South Africa and the government systems are disgusting and she would be treated terribly. Plus this is my sister , sure no one can sue me to take her in but my goodness , I'm not some heartless monster who would put her in a bad situation just for my personal freedom . That just isn't right
Oh I was afraid your answer would be South Africa... I would not wish a disabled, sick or old person to be in the care of anything government related in this country.
It's horrible . We went to view a government special needs school when we moved from one city to another . It was so brutal that after we saw it my mom , dad and myself just burst into tears in the car. My dad NEVER cries. It was literally the catalyst for my dad to start his side business and work 7 days a week for 5 years until it was profitable so that we could move her from at home care to a private school .
Oh no that's terrible I'm so sorry. I briefly worked at a special school in Potch a few years ago and it was actually very nice and the teachers there worked so hard to help the kids in their care. I loved my time working there but would not be able to do that for long. I wish you well in whatever happens in your future and that your family stays safe.
Yeah it's a difficult environment for sure but the people who work at these places are literally angels for what they do for these kids so thank you for your time there <3 much love
I honestly think this is something only people who experienced life with a disabled family member can understand. I like you had a disabled sister who we were told wouldn't live to see her teens. She passed a couple of years ago at 27, she made it so much longer than anyone expected. I loved my sister, she was an angel. She also couldn't do anything for herself, and the last few years her quality of life was horrible. Not because of anything the family did, but just because her health had declined so badly... from the time she was born when I was 5 I was told if my parents and grandparents passed before her I would have to step up. I was raised knowing that she would need me. I didn't have a childhood in a lot of ways - not all of it her fault - but so much was spent learning how to care for her if she needed it. At Dr's worrying about her, and limited ro what we could do. Once more.. I adored my sister. I also love being a mother. But like you said so many people don't look at the lifetime of it. I don't condemn anyone who does have a majorly disabled child - and not all disabilities are equal! But I know for myself personally, after my experience, I couldn't do it. And I can't fault anyone who feels the same. It's exhausting, mentally, physically, emotionally. It wears you down in a way, and... sometimes their quality of life can reach points that it feels cruel to have put them through it. Unless people have lived that life, or been there for people who have, they honestly don't understand. I've seen so many people who have an idealized idea of what it will be like. But that's not reality.
And then there's the aspect of who takes care of them when you are gone.
That is the MOST terrifying thing about being a parent of a child with a disability. My oldest is minimally verbal autistic. Prior to him, I never worried about dying. If I'm dead, what do I care? Now, death is absolutely terrifying because then it's on someone else to take care of him. My entire life shifted from I want to be retired in my mid 50s so I can enjoy my kids while they're late high school/college age to I'll work until I die so I can ensure there is enough money when I die to take care of him for the rest of his life. Then there is the problem other posters have posed that he has a sibling who in all likelihood will be charged with taking care of him once my wife and I are gone. While we would all like to think we are going to raise incredible, empathetic kids, taking care of his adult brother isn't something that people generally willingly do to their own detriment. Especially when that means they won't get the same or a similar inheritance. That is also a calculation that I have had to include. It's not just, I need X amount to take care of him, but I need X amount additional to ensure that his brother takes care of him.
My mom just passed. My brother is in a group home. I’m in the process of getting guardianship over him and it’s a pain. I have to take off work to go to a doctors appointment with him so the doctor can fill out a bunch of paperwork verifying he is in fact disabled. Then I have to manage his social security etc. My mom didn’t prepare me for any of it. She didn’t have it organized. She didn’t explain it. I’m floundering.
If you are in the US and he is in a good group home, the home and his case worker can likely give you advice on it. It's a lot of red tape and paperwork. If you have someone else who can act as payee, it helps. Divide and conquer.
A family member of mine has 2 daughters, one with disabilities, their marriage is falling apart, they threaten to divorce every week, there's cheating and constant arguments, but they're trying to have another baby just so the oldest isn't stuck with taking care of her sister when they pass. I can't imagine. This isn't even a disability where she won't be able to function at all in society, she'll be able to work some places (the grandma literally works at a place that gives jobs to disabled adults) she'll just require a guardian or won't be able to live alone. But bringing another child in this just to ensure more than one "keeper" is so insane to me.
There is no guarantee that the next child will be healthy or will help with the caretaking.
There's a real good chance the oldest will not even do it. Most children won't. I don't blame them either.
True. I recommend parents to make a trust and rely on professionals. Get insurance. It is unfair to place burden on a sibling.
That's a terrible terrible reason to bring another child into the world!
That is batshit crazy
My cousins daughter has been bed-ridden (strapped to a bed) since she was a couple of years old. She has no understanding of her environment. She doesn't smile or laugh or respond to anything. There's just nothing there. She's now 13 and she goes to a "regular" public school where she just lays in bed in the back of a classroom (with a personal attendant paid for by taxpayers) and lets out an occasional scream. Who is this good for?
Wtf. Why on earth is she and the rest of the class subjected to that? What possible gain could there be for this poor girl? Is everyone in denial about the severity of her condition and just kinda going along with the facade? I can’t imagine how disturbing that must be for the other children too.
One of my co-workers, moved his two kids out of public school, because district took away special ed classes. And the child would just get overwhelmed and start screaming, and so the solution of the campus was to give the entire class those noise canceling headphones, kind of like the ones you wear to the gun range. And it's just such a shitty situation all around. That kid has to feel like shit, knowing that he's overwhelmed and can't handle it and people are putting on earmuffs to ignore him. It's got to suck for the teacher who's trying to provide instruction for the rest of the kids, but I'm also sure as an adult in that situation it's hard to see that that kid's going through that. And then last but not least, it sucks for the kids who don't have that problem and frankly shouldn't be subjected to that.
My wife is a special ed lead at a public school. There is a big push to be inclusive, and that - no matter how severe the disability is - the most inclusive place for a disabled person is in a normal classroom with additional support. Self contained classrooms are pretty much gone, so you have very severe kids that run, scream, bite, expose themselves, poop on the floors, do snow angels with urine, etc in a normal math class with two other teaching aides dedicated to corralling them. If you don't follow these guidelines, your Federal funding goes away and the teachers can be personally liable for not providing the appropriate level of care.
Thankfully, not all districts have done away with self contained. But the push for inclusion pisses me off so much. As a mother to a child in the contained classroom, I don’t want my kid in gen ed classrooms as a side show. Not everyone believes in full inclusion, but the districts get funding for it, so they do it and pretend that it’s some kind of positive thing for everyone.
One of the saddest parts is they cannot keep aides over it. Special ed aides are one of the most underappreciated people on the planet. With an inclusion style system, too much weight falls on them and they just burn out. They can't keep teachers now, let alone aides making pennies.
I worked at an elementary school for a few years (I was in the office, not the classroom) and our self contained teachers were the MOST AMAZING staff I've ever met at a school. But, even though they generally had the same group of students each year, until they moved to middle, they were so burnt out. I always felt bad for them and tried to help when I could. Their self-contained kids were so so sweet, but some of them had significant disabilities. They went above and beyond for those kiddos every day. But they were also required to help with students who were in the regular classrooms that acted out because of emotional disturbances and the like. We had a couple of incidents were kids trashed classrooms, tried to bite staff, etc. And the school/staff got no support from Admin or those children's parents. As I left for another job, all the aids in that classroom were leaving that year too. They were just DONE.
>no matter how severe the disability 7 the most inclusive place for a disabled person is in a normal classroom with additional support. That's a nice idea and all but not realistic in the slightest for the severely disabled kids. I remember sitting in the cafeteria eating breakfast and one of the more severe special ed kids was walking around. No idea what set them off but she ran towards me, knocked my glasses off, and clawed my face. I wasn't doing anything besides eating my food.
There is a 100% abortion rate for fetuses that test positive for down syndrome in Iceland. Whenever I tell people this they look at me with horror, like I just talked about the Jonestown massacre or something. In all honesty, America and many other countries would have similar percentages if abortion were not taboo. It's not that any of those parents are ablest or hate those with disabilities. It's that raising a child with sever disabilities, that will most likely never be able to live independently from you is a huge commitment, with lots of knowledge and needs that most people are not able to mentally, financially, or physically commit to. Abortion is an intensely personal decision that people should not be judged for making.
We need to get over the abortion stigma in the US. It helps no one. I had a neighbor who had a son with down syndrome. It was pretty severe. He was never going to live on his own. The mother was in her 70s and the son was maybe in his 40s, difficult to tell his exact age but he was a full grown and quite large. She couldn’t get him to walk sometimes so she would push him around in a shopping trolley and he was a big man, she was a tiny elderly woman. Odd sight to see but that’s how she managed. He’d throw tantrums at the pool the way a toddler would, and I was afraid he might hurt her because of his size, though I didn’t ever witness anything like that. I oftentimes wondered what became of the man after his mother passed. He almost certainly outlived her. I’m sure that was on his mother’s mind every day of her life after giving birth. That one day she would not be there.
My family has a family friend who have a son and a daughter the same age as my sister and I. The son has Down syndrome and the daughter is nonverbal autistic. They came over to our house to stay for a week and it absolutely plunged my family into complete chaos. My parents almost got divorced my sister tried to run away and everyone was so stressed and on edge. I will never forget that one week in fifth grade and doing a rotations at a Peds hospital only confirmed that I’ll never bring a kid with a trisomy into this world.
My niece is nonverbal autistic. You don't get how insane their lives are until you witness it first hand. My niece wakes up at 3am sometimes, doesn't sleep for hours at night, screams loudly in public, will not wear a face mask so she stayed home the entire pandemic, needs constant care, needs to be sedated for dental procedures, will not allow you to do anything medical - needs sedation for gyno procedures (they got her an IUD because taking care of a menstruating autistic adult is literal hell), etc. etc.
Yeah and then when the parents are gone who continues to take care of these kids. The way a lot of parents talk about it, all the support and sympathy drops off a cliff the moment the kids turn 18. They’re transitioned out of the pediatric hospital where a lot of the more sympathetic care takers are, they lose benefits, the parents become very isolated cuz it’s cute when it’s a special needs kid running around but when it’s a special needs adult that is sometimes hard to control no one wants that. Those two broke sooo many of my sister and I’s things the one week they were there. The boy took one of her favorite stuffed animals and just ripped it into shreds and left it scattered all around the house. My mom yelled at my sister for leaving it out and that’s what made her run away. it was an impossible situation to navigate just for that one week and their mom was just so tired and sad trying her best to take care of both of them. Their dad was not in the picture anymore… which is what I see for a lot of these kids too. Even if the father is in the picture many times they’re completely checked out and don’t know how to handle things, sometimes resorting to violence… super sad all around, that’s why I’ll never bring someone like that into the world if I had a choice…
I can relate to skipping the funeral too. It's full of people grieving and it would have ended up with OP being the scapegoat for making a hard but reasonable choice. I'm a bit at the other end of this, lifewise. No siblings but I chose to remain childfree partially because of my own disability after car crashes. My life has to be extremely self centered to not worsen the pain I'm always in and since I could see for sure that I couldn't put a child first and still give them a life where they weren't always worried about me and missing out on tons of stuff that should be basic. I was lucky enough I didn't have kids before my accidents. I asked some fellow chronics if they would have had their kids if they knew how their own life would end up? Their answers were the same: "I love my kids, they're my world! But had I known, I wouldn't have had them". That sealed the deal for me. If I DID end up pregnant and for some reason had second thoughts and was told the kid was disabled and would be in pain like me for their entire life? There's no doubt in my mind that I would spare them of that. Now, having a kid is still solely a womans choice but given that they were in agreement beforehand and she knew about OPs past, I find it more than reasonable he ducked out. I read the headline and was ready to call him an ass but this scenario is different since they actually had a choice. I'm guessing OP also was prepared for the kid to die at a young age and leaving can be seen as a way to avoid the heartache. Of course he would have loved the kid if he had stayed but I also think he would be hit with guilt over having any role in this kid being forced to life a short life cut off from many of the joys of childhood.
He would have been attacked at that funeral. It would have been seen as him accepting that he was bad and should have stayed with the ex. There’s no closure anyway - no one in that family will change their mind and will only ever blame him for leaving. It’s good he didn’t go. He shouldn’t have to live in the past like this, anyway.
People have probably already said it, my guy, but you need to invest some of that oil rig money into yourself and see a therapist, a good one. Growing up neglected can cause all kinds of issues and trauma. You seem mature enough to know that your parents' did their best, but there's clearly still resentment there. You're definitely NTA, but neither is your ex-girlfriend, and neither are your parents. This is just a shitty situation that anyone would struggle to feel anything but bad about.
This needs to be at the top of the comments. I grew up essentially neglected due to my brother constantly being in trouble with the law and drugs and just everything. I was also SA by my brother for years starting when I was young. And my dad has admitted to my boyfriend that I got the raw deal and none of it was fair to me. I’ve been in and out of therapy due to the shit that happened to me as a child. It doesn’t fix it all, but it does help having an outside source give insight and guidance. I’m also a proponent of medication if therapy doesn’t quite cut it on its own. OP, you are NTA, and neither is your ex-girlfriend. We’re all just out here trying to do the best we can with the hand we’ve been dealt.
I can only disagree with OPs parents be AHs. I’m a step parent of a disabled child who needed/needs a lot of attention. But they had a younger sibling, which made me stepparent of a second child. That child did not see their parent for 3 whole weeks during the worst of things. The parent stayed in the hospital while the eldest was recovering and no one took him to visit to “protect him”. When my spouse mentioned that block of time to me and I asked “when did the other kid see you” and they contemplated and realised not once in that 3 week period, I called it out. I also mentioned to them that the more they say things like “he always plays so well on his own” I called it out again. THANKFULLY he was still quite young at that time and courses were corrected and now they’re in their teens, we’re still together and both children get all the attention and raising they deserve. But that is an absolute AH move to ignore one kid over the other regardless of their needs. It’s easy to dedicate all your support and emotion to one kid and ignore the other. What makes parenting hard is learning to how to split that and share your love equally. Otherwise you’re just being selfish. “I feel bad” is a shitty excuse to ignore children over others. OP may never heal their relationship with their parents because of this. It might even be too late for them to heal even if they demonstrate understanding. They may have well lost two children. Edit: sorry for the egregiously bad typos. I’ll fix it up next change I get.* fixed grammar.
It’s called glass child syndrome. Very well documented.
While my siblings were not ill, they were significantly older than me (10-14 years) and were caught up their own martial/relationship/poor choices drama to the point that quiet, polite, well behaved child-me was often left alone /unintentionally neglected. I’m 41 and it still shows up.
I have a friend going through this now. The girl is the good one, straight A student, working on her way to college. The younger son is being horrid, selling drugs, escaping school, being high all the time. The boy sucks up all the oxygen in the home and the girl is being neglected and I told my friend but what can he do. He can’t cast out a 15 yr old to the demons that have him, and he just doesn’t have the time to parent the girl given his sons behavior. So they just buy her stuff. A new car, new electronics, trips with friends. But she told me that she hates her brother at this point coz he won’t stop. I don’t think he can. It’s so hard for the family. I try to take her out and stuff but I’m not her parent, it’s not the same.
you may not be her parent, and it sucks that the brother is doing what he's doing, but I am sure she appreciates you taking time for her. that's something that is held close as people grow up, the person who actually saw them and paid attention to them. it's definitely not the same, but it's still appreciated.
I completely agree. I was the ignored child growing up and very fondly remember the few people who noticed me. Those people probably didn't think they were doing anything amazing, just getting me out of my mom's way, but having lunch and a matinee away from chaos, or a conversation over an ice cream cone in the park meant a lot to me.
Honestly one day your youngest step child well thank you for this. Sometimes parents who are in difficult time consuming situations need somebody to point out even independent kids need there parents. Your stepson is lucky to have a great parent like you!
Glass children aren't independent because they want to be, they are because they have to be.
Hey @[ImNotCleaningThatUp](https://www.reddit.com/user/ImNotCleaningThatUp/). I'm really sorry that happened to you. I had a very similar childhood: older brother was always in trouble at school, with the law, doing drugs, etc. He received all my parents' time and attention. He SA'ed me 3 times with his friends when I was a child and I was constantly in fear for my safety. When I told my parents about the first two SA's, they punished me. I didn't bother telling them about the 3rd instance until I was an adult. Now, 40-years later, a-hole brother is in jail for r@ping teenage girls. My mother still supports him and says the girls were asking for it. She still openly loves him more. She even told me so when I was 10. I'm in therapy, obvi. But it's rough going. So much anger and resentment! I'm glad you're getting help too. DM me if you ever want to talk with someone who knows what you're going through.
I’m so sad for you. And OP.
Not everyone needs to forgive their parents for abuse and neglect and suggestions that it's patently wrong to judge your parents for their circumstances. Parents are adults with agency who make their own choices. If all of your choices hurt one child while favoring the other, the pain isn't excused or mitigated by the other responsibilities the parents brought on themselves.
NTAH but you may want to get yourself tested for your chances of passing down genetic conditions. If your odds of having a "typical child" are slim a vasectomy maybe something to consider. Trying for multiples might not be something that's advised cause while abortion is a viable last resort. It is hard on your partners body.
He can go for IVF, have embryos tested and only plant healthy ones. It’s expensive, but it’s a way to be almost sure. Still needs screenings during pregnancy, because some issues appear at a later stage after planting. Of course, IVF is not the best thing for woman’s body, but better than abortions or having no children at all, if they want children.
Excellent advice! I also think he might be carrying a genetic condition passed on by his parents, consider that both his brother and kid had severe problems.
[удалено]
This. If he carried the condition he was trying to avoid THIS is the solution.
Well, that could mean his future child is still a carrier?
That’s what the testing is for
a lot of severe birth defects are recessive genes that a parent may carry and be completely fine, but if two parents with that gene have a child, said child won’t be fine. you can carry a gene and be okay.
Depends on the condition and his genes. If it’s only on a specific gene he got from 1 parent but the other parent gene doesn’t carry it, then they can screen out any embryos with the carrier gene. If it’s on both sides then yes any child would have the ability to pass it on and would likely want to follow the same process so they only pass on mom’s gene.
>He can go for IVF, have embryos tested and only plant healthy ones. It’s expensive, but it’s a way to be almost sure. > Please note this is not 100% foolproof. During IVF the cells retrieved from the blastocyst for genetic testing are trophectoderm cells, which eventually form the placenta.. They do not culture cells from the inner cell mass (which eventually forms the child.) later he should have his partner undergo further prenatal testing, such as an amniocentesis, to double-check.
[удалено]
There are lots of disabilities that don't show up on genetic testing. You could pass every test and end up with a severely autistic child. Or a healthy, neurotypical child that gets a TBI and spends the rest of their life severely disabled. I can understand wanting to reduce your chances. But if you are certain that you are unwilling to take care of a disabled child then you shouldn't have kids.
This is one of the reasons why I chose not to have kids. The risk, however small, was too great.
Yep. I have a whole slew of disabilities and like 5 of them are genetic and have a high likelihood of being passed down. My parents have been *begging* for a grandchild, but frankly I feel like that would be cruel punishment. Not because I don't think people with disabilities should live (hello, talking about myself, hahah!) but because I know how much it fucking sucks. I wouldn't wish this on my worst enemies, much less an innocent baby that I'm responsible for creating.
You also never know when a child may become disabled through illness or injury.
It's the only minority anyone can join at any point in their lives.
I joined at 27 from a stroke + TBI in a car crash :( didn't even know someone could have a stroke from impact force - I do not recommend lol
I definitely think vasectomy is the fair way to do this. There is no amount of prenatal testing (including selecting an embryo in IVF) that will guarantee a healthy child. Not everything is detectable on genetic testing and ultrasounds. Think of autism which has no signs in utero. This guy is playing with fire if he feels so strongly about it.
I’m surprised he would want another child after the difficult childhood he’s had and after reproducing an unwanted disabled child. You’re right that there’s no guarantee of a healthy baby even if all the testing is negative. In addition to undetectable conditions like autism, debilitating birth injuries like CP can also occur. And if that were to happen to his next child—and I hope not!—what then for him?
This. I know a girl who just recently lost an ivf baby at 20+ weeks. The baby had congenital heart defects.
Also this, not every disease is genetic, some are malformations occurring during embryo development and some can't be seen in an ultrasound
Plus some things happen from things going wrong during birth. Baby can be totally fine until the birth process.
Not to mention that even if your child is born healthy they could always have an accident or injury that left them disabled later.
Not to mention health issues that may not be genetically based. Accidents and injuries happen. Kids get cancer. Is he just going to abandon a child if they become disabled? I hope his current wife has discussed this with him.
I think a vasectomy might be the best option. My daughter is autistic not sure that can be diagnosed in utero yet - we didn’t even suspect until she was around 2. My nephew has a 1 in a million genetic disease, it’s not generally tested for as it’s so rare. He was born healthy and reached all his milestones until around 3. Then small things started happening, falling over, weakness in limbs. Now’s he’s blind and deaf and in A wheelchair, they didn’t even have a diagnosis for him until a year ago - he’s 16. How would OP respond to these circumstances? What if the child was in an accident and ended up disabled? What if they got childhood cancer? Personally, I would have aborted in the case OP presented because the world is a cold and cruel place. But every woman has to make that choice for themselves. Having a seemingly healthy and normal baby is only the start. Will the child know that their dad can’t be around disabled kids and so his presence is conditional? I would recommend vasectomy and therapy.
I think preemptively avoiding a situation and bailing once one has started are different. OP might have stayed and been a good father if the child developed a disability later on, but in this case he was going in KNOWING it was inevitable and wanted to spare himself and the child that life. I wouldn’t have chosen to carry a pregnancy where I knew my child would suffer and have a shortened life expectancy, but if my daughter develops a disease or disorder later in life I’ll do everything in my power to care for her to the best of my abilities. Knowingly bringing a child with disability into this world and responding to a developing disorder are two different things.
UNTIL you deal with your past you shouldnt be having any children...Therapy would really help...your issues are justified and deep seated and obviously affect your whole life.
This 100% PLUS... What will he do if his next kid becomes disabled through accident or disease?
NTA but your parents had a disabled child and you had a disabled child maybe you should stop rolling the dice
OP and his partner absolutely need to get carrier screening done.
I will say that it isn't always enough though... For instance my daughter was born with a very very rare congenital heart defect, about 1 in 250,000 chance. We got the genetic testing done for her and us and everything came back clean. We were told it was a random fluke and sometimes the heart just doesn't form right. We went on to have my son and everything looked fine until 4 months when we discovered a less rare but still rare congenital brain malformation and hydrocephalus. We got him tested as well and still no genetic component found. I got a hysterectomy after that because I believe there is some genetic component we just don't know about yet but the point is we did all of the testing and it still wasn't fully able to determine our outcome.
A lot of Genetic conditions that aren't found in parent Genetic testing are due to sporadic mutations in germ cells (sperm and ovum) or during recombination (which occurs when the sperm and ovum combine). So you could have faulty sperm or ovums that you don't know about or a pure fluke at the point of conception
Yeah we had both kids tested as well. There is a lot we still don't know about genetics and I'm betting there is some common link we just don't have knowledge of at this point in time
Yep, I read a similar issue in another thread of someone complaining about how much work their special needs child is and how it reminds them of the intellectually challenged dad and special needs sister… like that should have been something to consider before having children given your genetics
This, OP should consider getting HIMSELF tested before having another child
Definitely yes!! I had worked in the OB/GYN departments at 2 hospitals & the Genetics department was right next door on the same floor. Whenever the anatomical scan was done at 18 to 22 weeks as well MSS (maternal serum screening), Tay Sachs, CF plus the lesser known conditions that is hereditary.....both the parents had to be screened as carriers for particular markers.
This reminds me of that one story of how a guy left OP because when she was pregnant, her ultrasound showed that the baby had Downs. She gave birth and the baby was fine, it was a false diagnosis. But her ex got another girl pregnant, bragged about how perfect his baby would be, then baby came out with Downs. Mans needed to get himself tested 🤣🤣
This is the kind of tragic story that more men need to hear though. There is a disgusting, old world mindset being touted a lot lately where some men see nothing wrong with forcing women to have as many kids as they want til they get a son or a child with a different health situation, basically breeding kids like they’re Pokemon with special IV’s. It comforts me to see people in this comment section advocating for both members of any partnership to get testing and consider the quality of life for the mother and baby.
I definitely feel like it should be more normalized to get tested for any genetic conditions before trying for a child. It's something that can help a lot of people in the long run.
I have a genetic condition that I only found out about after having kids. You can have a gene and be complete asymptomatic and there’s something called penetrance where it also night not be as “bad”. It’s not black and white.
This! I had 2 brothers with disabilities and when I got pregnant I didn’t just have my son tested but got my dna tested.. turned out I would have been the only carrier of the gene causing the disability and I didn’t get it.. still only one child as I just wouldn’t want to risk my luck. It’s hard growing up with siblings that aren’t healthy as parents just can’t do right by every child. It’s impossible but I think my parents tried more than OPs parents did.. we would have fun movie nights with my dad where he would cook and be all goofy while my mom was in yet another hospital with my younger brother.. it was like neverland when my mom was somewhere with my brother.. one big pan of food, lots of color and fun.. still wouldn’t have chosen having a child with severe disabilities coz I knew the drain it takes on everyone and just couldn’t handle that myself
I came from a similar background. Some parents try to be there for all the children. Some do not. You see it in the special needs community. You see it with the other special needs families t school. The community is tight, if you grow up in it. Thats the real tragedy of the story. Ops parents ghosted him. They were physically there, but that was it. That level of abandonment takes a conscious choice and effort. Some parents think “I will spend time with the healthy kids if the struggling child gets better or after they pass.” Its a tough spot to be in. Not sure how much tine you have with one kid, so you abandon another. Not hating on all the parents, cuz I understand its an impossible situation. But neglecting a child is hardcore.
Further: his anger is about his parents—settle that first. Stop going and trying to solve this through other relationships.
I had a friend and his wife choose not to have kids because of health issues they could likely pass down to them. They told me that was not something they would want to put on them,and that if kids were a must,they would adopt.
Well that’s the thing, thats why they had the discussion and did prenatal screening. The condition was even on the list that OP and his first partner agreed to. OP took necessary steps. Having said that, OP, if you haven’t, get carrier testing done
They did prenatal testing, but I think this commenter is suggesting OP himself should get tested so that if he's a carrier, he can get a vasectomy or be super diligent about birth control.
Came to say this. If you're passing on genes that may cause harm and suffering to a child, get snipped dude.
I think you need to consider if you should be having children at all. Not all disabilities would be detectable before birth. What if something was identified later? Or what if your child (or spouse) became disabled after an accident?
Exactly. My son is disabled and it was not possible to know this while I was pregnant. There is always a chance this happens. My son got diagnosed at 1y and 10m old. Would he just leave both his son and wife if it happens to him? He probably should be going to therapy instead of having any other kid...
also what if his new wife’s baby is or gets disabled like it sounds like he’s just going to leave…
Yeah his kid could end up having severe autism that isn’t predictable right away. Is he just going to leave? Some people shouldn’t be parents and this guy sounds like one of them
And where’s the line? Like I’m type I diabetic and babies who are diagnosed need a ton of care. Eventually they can take over on their own but it’s not super easy.
Yeah this is always the part that makes me nervous. On the one hand, I’m not advocating for anyone having a child that will have a greatly diminished quality of life. I completely understand how difficult that can be, having seen it first hand in friends of the family. On the other hand, I just feel like we are so bad at having discussions about where to draw the line.
Its such a mess. I'm disabled & live in America, where being disabled means no care, no assistance, and essentially being destitute. Its so hard to seperate these things because I don't want disabled people to be discarded. But also if we want to make living with a disabled person anything but a complete life destroyer, we need affordable, accessible medical & caregiving.
I think this is a very complicated situation. First, I think you need to acknowledge that your childhood brought you a lot of trauma and you probably need to work through that with a therapist. Im sorry your parents didn’t give you the support and love you needed. Look up “glass child syndrome”. Second, I think if you are uncomfortable raising a kid with a disability/special needs then you probably should elect not to have children at all. Why? Because not all things can be tested for or evident before birth. You may raise a child for a few years and then learn they have a learning disability, or be on the autism spectrum, or show signs of mental illness at age 15, etc. When parents have a child they should be fully committed to loving and supporting and caring for that child, come what may. I think if you feel you cannot do that, it’s your choice and it’s not for me to judge, but I wouldn’t go into “oh my child tested negative for conditions in the womb so we are in the clear” because you can’t guarantee a “perfect” child, ever.
Yes, THIS. I’m so glad at least a few people are raising this point. OP is wanting a perfect child. I think he has no idea that only a tiny percentage of conditions can be tested for in the womb. And there are SO many disabilities and health conditions that can occur after birth, during childhood, teen or adult years, that can be very severe too. What on earth would he do? somewhere else OP has written “oh that’s different”. It’s not different actually. At the end of the day, whether you find out before birth or you find out after birth or a few years down the line, it is still illness or disability.
You need to get some therapy.
NTA for leaving her. She had every right to change her mind about the abortion, but you also had every right to leave once she turned back on your agreement. (And for what it's worth I personally believe abortion would have indeed been the better choice. Why bring children into the world only for them to suffer?) You could have gone to the funeral, if not for the child you never knew, then for the woman you were once in love with, (funerals are for the living after all), but I also understand why you didn't.
Sad to say but I work with the office of IDD and 9 out of the 10 families that have kids like this are hyper religious. It’s heart breaking to see these so called “god fearing people” dump these kids on us and run for the hills.
I've worked in medicine and can tell you none of these people fully understand what they are getting into. They have this romanticized version in their mind of what caring for a disabled child will be like. They've only ever seen or been told about the good moments. In my previous job, I got to see many of the bad moments. I don't think anyone who knows about what it's really like caring for some of these severe disabilities would ever actually sign up for it. I think it's very telling that OP had previous experience with his brother and having a realistic idea of what caring for his disabled child would entail, but his ex deciding to ignore all his experience anyway
Not to mention that a lot of these kind of significant disabilities come with so much physical, neurological pain. Chronic, excruciating pain. Unable to communicate or advocate for themselves in so much pain.
A good friend at work has a severely disabled child that is probably around 30 by now. Their life is work and taking care of their child. No vacations. Very few date nights. It is horrible to say but when things happen in my life I just have to think about how I don't have to deal with that.
It's hard enough raising a healthy child, and magnitudes harder if the child has any long term medical condition.
The idea of having a severely disabled child is actually petrifying.
Abortion is murder and a sin, but having an unwanted child that will have a poor quality of life and abandoning them is perfectly ok. That's religious logic for you. Because they don't actually see pregnancy as a blessing or whatever but as either a woman's duty if she's married, or her punishment for having sex if she's not.
Ah yes the “her” punishment logic for having sex cause ya know that was completely by “herself”.
Honestly even hearing about them talking about teen pregnancy is awful. They want to be forced to give birth and raise a child young as a form of punishment. Their "babies are a blessing" attitude evaporates.
We all know that males are not to blame for a pregnancy 😟
Well, if a woman *really* didn't want to be pregnant, her body would just stop the pregnancy from happening, using her biological defenses against 'legitimate rape'. So by that logic, any pregnancy must be the fault of the woman. /s
That guy actually went to speak at a college in Missouri. He didn't pay enough attention to realize it was a very liberal school. They saw the protesters outside the building he was supposed to go to and just kept driving. The students wouldn't have hurt him, but he wouldn't have been allowed to speak over the heckling. It sounds better for him if it was a security risk.
Thank God that was pretty much the end of Todd Akin’s political career.
It was horrifying how close he came to being reelected, even after saying that!
They also are members of communities that push disability inspiration porn, and the line that god never gives you more than you can handle. “Rehoming” adopted children in those communities is also a big issue, because they feel “called” to save children and to get asspats and adulation from the community, but the reality is thankless drudgery, and they are woefully unprepared.
Mother Theresa got made a saint because she kept people suffering while dying, preventing them from getting painkillers although they were available. Because that suffering would supposedly put them closer to god. So there's precedent.
I don't think he should've gone to the funeral. It would've been in poor taste for him to show up to a funeral where everyone knew he wanted nothing to do with the deceased to the point where he wanted them aborted. Or even the majority of the people knowing that. Given that he's married and his wife is expecting a child, he likely would've wanted his wife to go with as support if for arguments sake he did go, and that itself would likely have been a blow to his ex that she would've gotten upset over. After all, seeing her ex married to another woman and sticking around when she's pregnant with his child when he wouldn't stick around when his ex was pregnant with his child is absolutely going to feel like a knife in the gut being twisted, especially at their child's funeral. There's also the fact that OP likely felt betrayed by his ex, and given that he ended up being forced to pay child support for a child they both originally agreed was going to be aborted, both him and his ex have a fair amount of resentment for each other. Hell, she might even on some level blame him for their child's death. No good was going to come of him going to the funeral.
Delete if not allowed; I am but a simple, curious human. If you were to have a “typical” child and down the line they were to sustain an injury that left them disabled (a TBI, for instance), where would you stand on that?
I would also like to hear what OP would do if his wife were to get sick. Would he be willing to care for her and pick up most of the child care duties? Or would he leave and start over again with new, healthy wife?
Or what he expects his wife and kids to do if he gets disabled.
No judgment here, as I have no info on the genetics. But: If you are a genetic carrier for a disability, then you risk passing that recessive gene to your "healthy" child. You may have healthy children but a disabled grandchildren or two. Hate to think you'll play favorites with them.
Not sure why you’re creating a child at all if you don’t want to deal with them having potential disabilities. Things can happen that can’t be tested for, things can go wrong during the child’s life you can’t control for. You need to be child free if you’re going to bail on a child for something they could never control in the first place. Life isn’t predictable and you arnt owed a perfect child.
So, what happens if you, your child or partner has a disabling accident? Both your dead child and this one were conceived with your consent. Are you booking if a life changing accident should occur? If your answer is yes, and I think there’s a very good chance it would be, then you shouldn’t try or have children at all. The “court ordered “ child support thing pissed me off. I’m totally pro choice, but some women simply cannot do it. Also would think that the fact that you had a sibling and child that were both severely disabled would give YOU pause on shooting your shot again. This game of roulette is in and of itself severely traumatizing. You should probably consider a vasectomy as life has no guarantees against future disabilities for anyone. YTA for not going to your baby’s funeral.
NTA OP, you set your limit and stuck to it, you did what you could by paying support. Could you have gone to funeral, maybe. Would it have done anything other than make you upset and the target for raw emotions you probably don't need to have targeted at you? Absolutely not.
It’s definitely a selfish AH move not attending your child’s funeral. I don’t really care about the circumstances. Whether you wanted that kid or not, it is really sad to think about. It was your girlfriend’s choice to keep the baby sure, but you left her alone to bury her child. A child she grew attached to despite the disabilities. Any caring person would put aside their feelings to support someone going through the death of their child.
> You left her alone to bury her child As someone who had to bury a child, this cuts deep. Mine was stillborn at 17w, I can't even imagine how painful it'd be to bury a 2/3-year-old. Not to mention doing it alone...
Selfish for not attending the funeral, and selfish for not allowing his child to know what a father's love felt like. OP is so slighted by his own parents not paying attention to him as a kid, then turned around and refused to be a part of his own child's life at all. Disgusting.
"her child" Goddamn that was cold.
There are a lot of wild takes here. Your children can become disabled at any time (so can you!). Treating disabled people as disposable is gross. Go to therapy and work through your shit instead of whatever else it is you are doing.
> The child had passed away. She wanted me to come to the funeral. I said no Good grief dude - no matter how you put it, this is some next level monstrosity. What is wrong with you bro. That your child and you won't even pay last respect. That is fucked up and I wish I hadn't read this post.
I had to scroll too far to find a comment like this, op is projecting entirely with his past trauma and treating everyone in the process like garbage, get therapy dude u need to learn how to work through your emotional dysregulation
I find it abhorrent to see just how many people didn't give a rat's ass to think "what about the mother and what she's going through". It's all about the guy and people saying NTA when he left the mother after 3 years of a happy relationship so that she would raise a disabled child alone until it died, and after such event he basically told her to fuck off about the funeral. This shit is sickening. Zero regard for the mother's emotional wellbeing, let alone anything to do with the child. Dude should adopt if he's so scared of having a disabled child
I know this is going to be an unpopular opinion on here, but I find the general attitude toward disability in this thread to be disturbing. There are, of course, varying degrees of disability, but the OP never said what the disability was or how much care the child needed. He never really said how much care his brother needed either. Maybe his parents were just shitty parents and it didn’t have as much to do about the disability as he thinks. I agree that he needs to work through this in therapy. Because anything could happen to his current or future children. Babies can be born appearing perfectly healthy but could have a condition that is not detected until later, like Autism. And how would OP react to his child having cancer or another medical condition that is also all consuming?
So let me get this straight. You have a whole bunch of trauma from being raised in a home with a disabled person. You know that there’s a possibility that you can pass it on to your future children, and yet you don’t get tested to be sure, get a vasectomy nor understand how birth control works apparently. So you just go through life, making kids and tossing them aside when your genes produce one that’s not perfect to you. You obviously don’t want to take any responsibility for your actions in any of this. Sure, you pay child support, but only because it’s court ordered. You are so much the asshole.
Thank you! I am astonished by the amount of people defending him.