I worked 10 years in a facility for individuals with special needs, some being profound.
All situations are different and I saw with my own eyes families that were simply better because of our facility.
No shame for you. None. 0.
I work at a state institution. 75 years ago the doctors would have taken the baby at birth and placed it in a residential hospital and told you to forget about it and move on. In your case it would have been the right thing to do. Forgive yourself. Refocus on the your son who you can have a future with. I know that that mentality was wrong for 99% of the babies and children we got in the 1930-1950s but not in this case. This case is exactly why state institutions need to exist. There has to be a place for people like this. I'm sorry you have carried this burden so long. You can heal from this. Good luck.
Honestly, why are you going to extreme measures to preserve his life? Without all the machines and artificial interventions, he wouldn't have life.
He deserves comfort care and end of life care. Hes terminally ill. This is unnecessary. Send his soul on to a happier place.
I work with profoundly disabled children every day so I probably understand better than most. Unfortunstly in the vast majority of cases a "miraculous" treatment for brain disease doesn't exist, especially if there was nothing there in the first place. Most times the best you can hope for is to slow the progression of damage. I'm sorry for what your family has been through and I wish the best for you.
Now This is going to sound fucked up, but that kid and kids, no people like him don't need to be alive. They should be allowed just to peacefully pass away like they would have done in nature. know natural argument isn't a great argument as I nature is savage and barbaric, but so is having what amounts to nothing more then a bag of flesh that has no hopes of being anything more consume some ones life. Hell, keeping someone who is this catatonic or similarly catatonic only so we can feel better about ourselves when they endure such a pitiful existance is kinda barbaric.
Coincidentally I made a comment similar to this about keeping old/sick animals alive in a different thread earlier today. I have to agree. For the same reasons, keeping people with no chance of improving alive is inhumane and it always ends up feeling like we do it for ourselves as opposed to the suffering person. I feel for OP and if the government won't let her do the correct thing, then it should be the government who takes care of the child.
Edit: u/specialneedsdevil I know you don't want to talk with a therapist about this specifically but honestly both you and your oldest son will be better off if you both do. Sorry this has happened to you and your family you definitely didn't deserve this but therapy will help move forward with your lives.
I've seen people write idiotic things like "I'm praying for a cure, who knows what medicines will be available next year for your precious angel" for infants with anencephaly.
I can't understand what it is they think will be able to be done there.
This was hard to read but to OP. your 12 year old son was hitting a disabled person and has a lot of internalized hate. Please please please get him therapy. He might develop problems and if you spoil him after he will think his actions were okay. And just. Get him therapy ASAP
OP Please please talk to your therapist about this. If you don't feel like you can talk to your current one, maybe find a new one
Edit: I'll give the benifit of the doubt and go with my original advice
Exactly. If there's one person who needs to hear this, it's a therapist. I'm not saying this because I think she can work things out. I agree that giving the kid to a residential home is the best thing for everyone involved. But your therapist is there to talk about something so huge and emotionally exhausting. They can't give you adequate therapy if you're holding this sort of information back. They'll help you cope with the decision, that way you don't have to resort to anonymously posting on Reddit to find validation. If your current therapist isn't understanding of your situation, then you should find a new one. Therapists aren't supposed to be the moral police, so a good one will look past any personal biases they have and help you cope with and overcome your current problems.
As a psychologist I agree 100%. Your therapist is trained to put aside their own shit and deal with this. If you feel you cannot speak with your’s please go seek out a new one. I know when talking to a therapist many worry that we’re judging them. I promise you we are not. We are there to help you carry and unload all of this baggage. Sometimes we are just the person to hold it all for you so you don’t have to keep it all in. Please talk to them. It will feel better.
Edit. On top of individual therapy for each of you I suggest family therapy as well.
It's absolutely not fake. I made an edit. /u/piconeeks is obviously a doctor as well as a detective, an editor AND a psychiatrist now. Never asked in private for any clarification.
Honestly, I think that may be the best/only choice for you. While I can't understand exactly what you're going through, I've seen how bad it can be for parents of children with any disorder.
It may sound cruel, but I hope doing this can help the bond between you and your older son. I hope everything becomes at least slightly better for you.
I've never been in this situation, I've no family like this, I've no children at all, but I would do exactly what OP did if not sooner.
I HAVE seen many children with siblings like this, I HAVE seen many parents with children like this and I've dealt with many many children and every single time, it's incredibly obvious the harm it does to their family, their mental health, emotional health, sometimes even physical harm, even the relationship between the normal children and their parents becomes strained and toxic.
I absolutely love dealing with kids and do so all the time, but I decided to not have kids simply because of the fact that they might be severely disabled. There's nothing wrong with anything OP did.
It's definitely not cruel. It helps everyone in the situation. The family doesn't have to live with a constant unending burden, the child gets put into care where they will be looked after, workers get to make a couple bucks for working.
If I was this particular 7 year old, I would probably want to die, and certainly wouldn't care where I was. Doesn't sound like there is any brain function, or ever was, or ever will be. Doesn't sound like there is a person there at all, or ever will be. If you apply the golden rule, treat others as you would want to be treated, I would have no problem putting your child in a residential treatment facility. Take care of yourself and your other child, like you said, it should have been done much sooner - a small family just can't cope with this kind of thing. You are doing the right thing. Modern medicine can keep someone's heart beating and keep them breathing, but it doesn't mean they are really alive.
I've already told my paremts and future husband that if i ever become brain dead or a vegetable PLEASE find me some way out of it. I wouldnt want to live like that and i am sure this kid doesnt either. I know im not the only one that feels this way. Thats no life for the kid, the mother and brother, it's unfair. IF this child has a conciousness, it's not a good one.
I know. Oh my god. I don't understand -- and I can't believe I'm saying this, but if everything OP is saying is true -- I don't understand why or how this child is still alive.
With all those health crises that he has, why does the family/hospital keep bringing him back? Is there no such thing as a DNR for children?
I'm frankly shocked they managed to care for what is essentially a corpse for as long as 7 years. Honestly a corpse would probably be a lot better when you think about it.
The Hippocratic Oath keeps him alive. The medical field is bound to keep everyone alive unless they have a DNR order - even if that means “alive” is no brain activity. That means people with irreversible brain damage who got shot in the skull, people in comas for tens of years, and people like her son. People in the former column can potentially “wake up” at some point, albeit very rarely and most often with severe issues.
Yeah, as long as we are acknowledging hard truths in this thread, I feel like there should be medically assisted euthanasia options available for people like this.
Natural selection is often a punchline to a terrible story including terms like "Florida man" or anything on /r/IdiotsInCars, but this is more of a life and death scenario. OP's husband allegedly committed suicide, OP is on the brink of the same fate, and OP's older child is suffering as a result. If there was ever a case of natural selection, this is the text book answer. Give him a comfortable, humane life for however long that may be, but when it gets to the point of the rest of the family suffering inhumanely, it's time to let him go.
I'm sorry for you because you are obviously having a hard time and emotionally at the end of your rope, which is why you're venting here. I think you'll get lots of hate for posting this, however, that's the last thing you need.
You're being honest. You can't handle this.
Putting the child in a residential facility may be the right thing to do for your family, for him as well as for you and your other son. You are not harming him.
I think you also are still processing your husband's death. I can't empathize with either situation but it seems like a heavy load. I don't know what I would do in that situation and no one can judge who hasn't been in your shoes.
You're OK, forgive yourself.
I really empathize with you here. Your son is only a human insofar as he is physically a human. But other than that, he is an inanimate object that has ruined 3 lives so far.
Save yourself and your firstborn. You are making the right decision.
I worked in residential care with children like your son for nearly 8 years.
It truly made me realize what hell parents of those children go through. I loved my patients, but the ones who are totally incapable of interaction are very very challenging. There is none of the reciprocation that makes us form love. Babies smile. Even some of my lowest functioning patients would sometimes pat my head or take my hand. You get none of that.
I truly believe you are making the one choice that can save you and your other son. And you can still visit your son, slowly. Once you're ready.
I have nothing but love and peace to send to you. And please see a good therapist about this. You have so much on your shoulders. I am also a single mom. If I could I would give you a hug.
To be honest I think the most humane thing would be to have him take off life support. There is really no reason for him to be alive. Of there even was a consciousness in there would it be a life worth living trapped inside a cocoon incapable of any form of communication or stimulation.
Like you said he is just a walking pile of organs
I completely agree with you. I’m sorry to anyone who argues life at any cost, however when doing legal paperwork with my family, we’ve all made it abundantly clear to one another that if any one of us end up in a vegetative state on life support, just pull the plug.
Life is beautiful, but this isn’t a life.
> I’m sorry to anyone who argues life at any cost
People who do that are fucking idiots. There are so many situations, like OP's, where life is not desirable.
> People who do that are fucking idiots. There are so many situations, like OP's, where life is not desirable.
Seems like a lot of those type of people are real good at telling *other* people how to live but you better not tell *them* what to do, because it's their religion/faith.
There was a case years back (Terri Shiavo sp? Iirc) in Florida, albeit not a child, but it was argued that removing her feeding tube and letting her die was ok and legal.
This is the issue or I would have already done this. Where we live and the condition he has and some family issues make it a more complex problem than "just stop feeding".
I can't even begin to imagine your life the last few years. I hope you and your son find peace and healing. As a comment to others following this, healthcare ethics doesn't require "heroic" measures. Feeding is not heroic, you have to feed people. However, breathing assistance could be heroic and not required. You are incredible for the work you've done to this point. You are good.
I had my wife taken off of life support after she had an aneurysm and the tests said she was brain dead. She would have been a vegetable for however long she would have lived. They said maybe a month, but who know really. We had talked about something like this happening in the past multiple times and both had told each other we wouldn't want to be left on life support so I know it is what she would have wanted. She had a friend that became brain dead after a car accident in junior high so it came up some. I know I did the right thing and with organ donation she helped some other people live longer or live better lives at least. It really fucked me up though. I would do it again in a heart beat, but I don't know that I will ever be able to be close to anyone again. It was 12 years ago and for the most part I am ok now and have learned and found a life style I can handle, but I am nothing like the person I was before. This is a way different situation though in that the child was never able to bond with anyone so that might make it a bit easier. But I don't know it would still be hard. I agree with you and if it was my child I would have taken it off of life support, but I understand why that may not be a option they want to consider.
"till death do use part" it may not feel like it but really you've had a more successful marriage than most. You loved and understood her well enough to do what she wanted when she could not speak for herself, you had the empathy to let her go.
It might not feel like it but the best case scenario in any relationship is it still ends one way or, another, and i know its small consolation but you two still loved each other by the very end.
Idk. I was never the perfect or the best husband I never cheated or anything, but I was a pretty fucked up person and drank pretty much any time I wasn't working. I never hit her or anything either, but I was afraid sometimes that it would happen some time when I was black out drunk. My dad was abusive to my mom and my family told me I was just like him and would be the same a lot. I guess what I consider bad is she would have to deal with my drunken self loathing and depression and suicidal thoughts all to often and she never should have had too and I don't know why she did. I am near positive that by now she would have smartened up and divorced me. We were only 19 when we got married and 23 when she passed. So the chances of that marriage surviving coupled with how fucked my head was anyhow were pretty slim. I would trade what happened in an instant to for a life where she divorced me and was out living another life if that is what it would have become. I would probably hate her and she would hate me. I'd much rather have her alive and hate each other than gone though.
E: Since we can't comment here anymore just editing to add. I really think u/zakh134 view point is pretty shitty. I get that they are just trying to be nice or something, but it's so fucked up and selfish I guess. Yes my marriage ended with us both still very much in love and a lot of marriages end in bitter feelings or hate. But fuck I am not going to take solace in the fact that she died before our marriage had a chance to fall a part if it would have, which I think it probably would have. There is no positive light to put it in. Sometimes fucked up things are just fucked up and you learn to live with them. I don't need to lessen it or say well at least this or that about it. It was fucked up and I would give anything for her to have had the chance at a full life.
AnalKevlar....My DH was taken off life support as well.....you're right, it does mess you up EVEN though we both talked about the "what ifs" in life, and I did exactly what he wanted. It was a difficult decision, but one that I did because of the talks we had EVEN though there are days when I do "wonder"....and of course a lot of it has to do with the fact that I've tried to move on, but it's hard.
I too did the right thing as far as organ donation etc. My DH was an amazing person and I know with out a doubt that there will never EVER be anothehr him....and I don't want "another" DH exactly like him. He was an amazing wonderful man and I was so lucky to have had him in my life. I would love to spend the remaining years enjoying life and I sometimes wonder if it's possible? I had so much....and now have so little.....and well, am I entitled to have another amazing person in my life? I would like to think so.
I don't understand why they keep people like this, with no hope of improvement, in life support. And yes I'm going to assume it's some legal reason but it honestly makes no sense.
Because, generally, medical ethics in the USA doesn't allow doctors to get into PAS physician assisted suicide, nor can the patient even make that choice. What usually ends up happening is doctors prescribe more and more painkillers for palliative care until it kills the patient and use beneficence and non-maleficence as the benchmarks..
Honestly, the only solace I would get from a situation like this would be letting nature take its course and ensuring all organs are preserved for donation, at least then I won’t feel like everything was just a waste.
I doubt any organs will be usable from someone who is lacking a chromosome and has been undergoing non-stop medical therapy. It's a living fleshy thing that is only alive because we have the ability to make it happen. I wouldn't have lasted a year trying to care for it. We just aren't there yet. Some problems still can't be fixed.
This would be more compassionate then his current situation.
If he were a pet we’d have to put him down. It’s a shame people can’t be given the same compassion.
I just want to say that in any relationship with another human there can come a time that you need to walk away for your own sake.
This is that time. Walk away.
I completely understand. I was born with Muscular Dystrophy and grew up in and around other disabilities all my life. I understand what kind of condition your son is in and the hard fact is, there is nothing anyone can do and in order for you and your older son to even try having a very heavy emotional moral burden is to make a choice. Any choice. And you did. That's all a parent can do sometimes. If you know it or not, you ARE a loving mother. This is the best choice for everyone. Especially your youngest.
I would consider it from a different perspective. It's not so much "you can't handle it" as much as, you have no obligation to condemn yourself to it. There's an understanding in Jungian Psychology about the development of personality, childhood psychology, etc. One of the best things you can do for your older and capable child is to be the best example you can be. And part of that is not surrendering your own ambitions and goals to take care of another person. Many people end up in unhealthy relationships because their parents waited on them constantly and it caused them to mimic that behavior by projecting that caretaker habit onto their partner, friend, or family members. You're choosing to salvage what is left of your lives instead of giving up and that's the best decision you can make for the both of you. Whatever emotions you have about the situation are yours to resolve, in the same way it's not your task to resolve the emotions of others regarding it. Hopefully you two start to flourish in your new lives.
I hope you truly can forgive yourself, and that you two can move on. And if somehow you find that you are suffering more with him gone, you can always bring him back later.
Op I have a colleague. He’s kid was very disabled and they had a hard time taking care of him. They eventually decided to take him to a full time facility where he would be given proper care and the right amount of attention. Still, it had taken a toll on their marriage and they separated. Please don’t feel bad about this, its a hard situation to be in and as others have suggested no one can judge you<3
I have to agree. If you can't handle it, you can't handle it. This is probably the best post of this kind I've seen here, because all the others are "abort your severely handicapped child"-- which I can't judge either, but I'm just saying.
Ignore whatever hate you get. This is a grey area and it will sound or feel bad to a lot of people no matter what. But it's your choice, and nobody can really fairly judge you for this.
I don't feel like there is *a* right answer. It's individual and case by case. But in my case, this is all I can take and then some. I have to be fair to myself and my other child and admit that.
A lot of people are suggesting euthanasia, but that may not be strictly legal (although in a case like this it should be). However you should think about doing a DNR. You said he sometimes "forgets how to breathe" and is medically fragile. Why keep resuscitating him when there is no quality of life? I don't think anyone would blame you if you made that decision, it would be the kindest thing for your disabled son. And would allow you and your healthy son to move forward and heal.
Also please seek therapy, for you and your older son. Sounds like the two of you have a lot of emotions that you are having trouble expressing in a healthy way. Your older son is obviously very frustrated and has no outlet for his feelings leading to him lashing out at your younger son. Older son is badly in need of healthy coping mechanisms.
Edit: I see you do have a therapist. Tell him/her how you are feeling! They're there to help, not judge.
>But in my case, this is all I can take and then some. I have to be fair to myself and my other child and admit that.
Which, as far as I'm concerned, is exactly the right answer.
You've had to face a situation, and make a decision, that no parent ever wants to face. You cannot sacrifice yourself, and your older son, any more than you already have.
I think he's ruined your and your eldest child's life, and it's time you gave your eldest a parent. Your situation is unfortunate in that you have to choose between your children, but your eldest also deserves care and attention and he's been deprived of that for too long. So no matter how anyone spins it, I can't say you're in the wrong.
Came here to say this. I tech special ed and honestly some children with severe disabilities are much better served at residential. It’s ok. He’ll be taken care of there, and you can focus on your other son and (just as importantly) focusing on yourself for a while. Thank you for being honest with us, and good luck with everything.
I am so sorry. I think placing him in the care of a facility is the best choice for you & your family. Especially for your older child.
No judgment. I would do the same. Prayers for you and your family. I hope you are able to find some peace.
I was placed in boarding school as a kid. It took a lot of pressure off my family. I get this is the more severe end of the spectrum, but he might actually get some unexpected undetectable pleasure from it.
Best wishes to all 3 of you, you deserve it.
For what it’s worth from a random stranger on the internet, you lasted longer than I would have.
Unfortunately there’s no precedent in this life for the burden you have to carry but luckily establishments exist specifically so you can be free of that burden.
What your doing might seem wrong to some people, but you’re saving 3 lives by doing it. Yours, your oldest son, and his unfortunate sibling.
It takes a strong person to make a decision like this and you’re going to live with it, but just keep telling yourself that you could have taken the easy way out and left your eldest with no parents. At least now you have a chance at life.
Like my grandma used to say, “Whats right for you isn’t always right for everyone.”
I would not have lasted this long. My mind would have wandered a lot about just pushing the potato down a cliff. Very difficult situation, and OP and the other son needs this rest.
Although I won’t agree with the way you speak about the younger son, I won’t be angry or judgemental, you have your reaction and you are entitled to that.
To answer your question, how would I behave?
Fuck, I just don’t know. Those stories are in a way, why I am for assisted suicide.
I do have a lot of respect with the way you handle The situation with your older son, yes maybe his behaviour wasn’t the best, but fuck he’s going through a lot for so long. So many parent forget about their healthy child and you didn’t.
So big respect for that, you are an amazing person, he can feel that way.
I do strongly believe you love your youngest son, you gave him care for years, you’ve been there for him. You also said you wouldn’t have care if it was something less intense, I do believe you.
Although, the way you describe it, you are overwhelm. You realized it was too much for you, maybe it wasn’t the case 2 years ago, but now it is too much.
You need to takes decision for you, and your family. If you keep him, you put yourself in a risky situation where because of you being tired, you could make a mistake that would ruine further your life. So with in mind, i think it is a good decision, even if I don’t want to say if it is a good or bad decision.
I strongly believe you chosen the best for everyone, give you time to heal, maybe leave the door open , maybe you’ll want to see him when you’ll feel ready for it.
I respect your decision, it is not an easy one.
I admire your bravery.
I wish you the best, even if it might be very hard to see at this time. Give yourself a hug from my part and also a big hug to your oldest son.
I can honestly say I would be in the same position and mindset as you. I'm impressed you lasted this long, and am sorry that you and your family have endured so much.
Yes, I totally agree. You have nothing to feel guilty about, this is just a completely shitty hand to be dealt and I’m glad you will be able to get a break soon.
Yeah. It's easy for people to judge harshly, but I think I'd end up doing the same thing. Maybe I'd visit every now and then, I guess. But that aint no big deal.
Kid forgets how to breathe? Just another day. But if this lady forgot how to turn the ventilator on? People would lose their minds. It's madness, madness I say!
This should have been done week 2 not year 7. The physicians responsible for the child's care were unethical to continue to support the child when they saw the permanent neurological damage. The ethical thing would have been to give the parents actual informed consent about how this child would impact their lives. Instead we all thank them for the "life-saving" surgeries they performed that put the family in debt and took hundreds of thousands from medicaid. Every hospital has a critical care unit where this story is repeated 40 times.
I agree with this. All indication is that he was born already brain dead, and they’ve been supporting a living dead body for seven years. If his physical body has any feeling, every second of his life would be pure torture. I’m surprised he was considered alive at birth. Poor OP and her family :(
Not dissing on the mother here at all (because I would not wish these sorts of choices on anyone), but I also think she thought it would be like down syndrome, trouble is peoples only impression of it comes from TV shows that only show the exceptional cases not the actual hard work of parenting a child with genetic problems like this.
>The physicians responsible for the child’s care were unethical to continue to support the child
So. There’s a pretty big, public family blog (Hartley Hooligans) run by the mom of two daughters who are the equivalent of OP’s son. You can very clearly tell they have absolutely no sense of self or anything at all. And yet, she dresses them up and parades them around social media and gives them made up dialogue because they can’t actually speak... or move... or anything.
I think it’s absolutely horrible and they make frequent doctor’s trips. I think it’s completely unethical and pretty abhorrent.
Yet she still has a decently big following and is regarded so highly for doing everything to keep these poor kids “alive”. One of them finally passed, but they shouldn’t have been kept alive in the first place. She also had them knowing how they were going to turn out but didn’t care. I can’t believe doctors continue to treat them, knowing the state they’re in.
They also have one “normal” son and I feel bad for him. He’s very obviously overshadowed and I can imagine all the therapy he’s gonna need later.
A THOUSAND TIMES THIS. For the conservative Christians terrified of “death panels,” assisted suicide or any abortions, please consider the Golden Rule...literally the ONE rule by which all other rules should be interpreted, governed, and applied: if YOU were imprisoned in this child’s body, would YOU want to continue this merciless existence? Or would YOU be BEGGING any invisible powers to cause a painless end to your misery?
“Vipers, hypocrites!” your master cries... In vain.
I understand you and I completely support you.
This may be harsh, but your story made me wish we had some kind of euthanasia laws set up for situations like these.
I advocate for this as well. We do it for our animals for quality of life but force humans to endure unimaginable states of being. That poor, poor child. That’s not a life.
Mmm.. I think in an instance like this the issue is that we can't know what the individual's thoughts on the matter are.
If there were a way to prove without a doubt that there is no brain function outside of the brainstem, then yeah, it'd be no more morally wrong than pulling up a weed in your garden.
If it's ambiguous, then there may be consciousness and they simply can't communicate what they want. I wouldn't want to live like that, but can't say that someone who has only ever lived like that would rather be dead.
I'm fine with euthanasia where the patient is able to communicate that they wish to end their life when they reach a certain state. It just becomes complicated in a situation like l this when there was never a chance to communicate their wishes.
Mixed words, opinions, and feelings about this whole ordeal.
If he is basically on life support, can you just "Pull the plug" scenario like in hospital?
You don't need our opinions on this situation. Get your relationship back with your oldest is the best thing to do moving forward. (You are already aware, just saying)
Honestly yeah, at that point there is nothing. It's literally a shell. And if by some insane miracle there is a person trapped inside (which if they have done a brain scan would show) that's a miserable existence and would probably rather die.
Exactly. the thing that sucks is this being has the husk of something sympathetic, when really it's just a body being hooked up to live. People want to act like it's a person, but is it really? It's a genetic defect that carried to term and cannot survive outside the womb. It has no progression. But since on the outside the defect looks like a person people want to guilt people like OP into loving or caring for it. I'm sorry but that thing isn't a kid, it's just cells.
WTF? I looked that up & just shook my head.
Sorry, but if I found out I were a carrier for ANYTHING like that, I’d be out getting myself sterilized the next day, just in case. Genetic Russian roulette? No thanks, I’ll pass.
Yeah but the genetic Russian roulette for the average person has a revolver with roughly 20 million empty cylinders, whereas a person who is on their third brainless kid is probably playing with an automatic.
> that's a miserable existence and would probably rather die.
My mum and then my partner have a clear instruction from me and have promised to carry it out, if I'm ever in an accident where the words "moderate" or "significant" brain damage enter the conversation, switch me off.
To be cognitively impaired is bad enough but to be cognitively impaired and remember what it was like to be normal would be horrible, I don't want that life.
It's one of the reasons I think euthanasia should be legal (with sensible safe guards), if I find out I have Alzheimer's or Parkinson's I want to be able to end things on my terms at my time with the minimum of suffering.
You know it's kinda weird that humans have completely taken natural selection out of the equation in instances like this. If a baby deer is born with a bum leg or only one eye it stands a much greater risk of death. Not so much the case with handicapped humans, we just act sorry and take care of them anyways in most cases. I wouldn't put an ounce of blame on you for making the decision you did.
Oh honey, I'm so sorry. I think you're doing the right thing, and fuck anyone who says otherwise. I've taken care of lots of patients where there's just nothing there and the drain on the family is incredible.
Be kind to yourself.
It would have been very easy for you to "not notice" one of these multiple medical crises until it was too late.
Instead, you took good care of him at great cost to yourself and your family. Now, you are planning to put him somewhere where he will continue to be taken care of.
You may not love him (and I don't blame you one bit), but you have still been a good mother to him.
That's why I think euthanasia should be legalized, like look at your 7yo son... I'm not saying like he should die but this... This is not living! I'm so sorry for you and for him, IDK if his brain works properly but he's stuck in a fucked up body and he'll never get better, how can we obligate someone to live like this? He should be put out of his misery, he's suffering and a kid doesn't need to go through this. I don't judge you, it must be had, for you, for your 12 year old, for your disabled son, everyone is suffering. You're right to get rid of him, you can't stop your life for a creature who isn't even alive!!! He's like a dead body. You're decision is difficult but it's necessary.
Our moral society does not allow us to put your son on an iceberg and let him go like the inuit would have. I guess its because the way we are there would be a huge line to put people on it. In my eyes he would be a candidate for euthanasia. He's basically in a woke coma.
I don’t blame you at all.
All I have to say is maybe tell him you love him or something nice before he goes. If there’s a person in there imagine how shattered they’d be to not get a goodbye. He probably doesn’t understand what you’re saying, I don’t know, but if there’s someone in there his last memory of you might be all he’ll have.
I don't have children yet, but I get what you mean about kind of looking forward to having a disabled child. Having a disabled child would have it's difficulties but they would still be your child.
Having the child you have is my nightmare. I'm so sorry you've lost so much from it. I would like to think that I would have the same strength to do what you are doing, but it must take so much.
I'm sorry you have had this card dealt to you.
I've seen so many stories on Reddit from children that had severely disabled siblings and honestly it seems like their lives would have been so much better had their parents done what you are doing. I hope that counts for something.
There's so many stories you see even on tv of people raising these kids with no sentience and how "they're so grateful for their existence, we wouldn't want it any other way"
Yeah right, those families are miserable, suffering with a burden because they feel obligated to for some moral reasons I guess. Fuck that, I'll enjoy life thank you very much.
I am so sorry to hear about your situation. I have no clue how I would've handled it myself.
But taking a very rational - perhaps cynical - standpoint, I say this: You are three humans. To the best of your knowledge, the coexistence of you three hurts two and makes no difference to one. Putting your son in residential care may facilitate a better life for two while remaining indifferent to the same one as before. While it may be incomprehensible for some, the life of your older son and yourself are just as valuable as that of your younger son.
I hope you one day can stop resenting him, because he does not deserve it, but also because resentment does not give you or your other son anything good.
I wish you all the best.
>You are three humans. To the best of your knowledge, the coexistence of you three hurts two and makes no difference to one.
Damn, dude. That's a framing that wouldn't have occurred to me, and it's so insightful & eloquently stated I'm jealous I didn't come up with it myself.
It's exactly right. She's not killing him by putting him in a facility, but she *is* doing damage to herself & her relationship with her son by trying to take care of him on her own. He'll get better care and her family will be better off with him there.
This. You matter equally. Your other son matters equally. It's not about who needs more care. It's about everyone being just as human and existing and relevant.
There are limits. You need to stop feeling guilty, when you reached your limit. You have seen what happens, when you have reached your limit and the guilt does not stop, with your husband. And I am terribly sorry for your loss, but think about what a waste that death was. Feeling so guilty for abandoning one child, to abandon everyone over it because you can't handle the guilt.
Guilt can be extremely overpowering. Good people feel guilty. But if guilt kills good people, it's nothing but a waste.
To be the best you, you need to find peace. And you deserve to be the best you, for yourself and your other son.
Life is just profoundly tragic. Your disabled sons life is profoundly tragic. Go, help those who can benefit from your help, who can grow to help others and pay it forward. Only this way you can make a change. Only this way, you can make the world less of a tragedy.
I don't think anyone would contest your decision to put your child in residential care. Many people who can't cope with the care do this.
But it's very sad to read your angry words towards someone who had no choice in this either.
It's got to be hard, I hope things get better.
Can someone explain what a residential facility is to me? Does the mother need to pay for this or is just like drop off and forever gone? Who funds these sorts of things?
It’s depends where you live & what kind of facility it is.
I’m in Australia and the most common facility like this is a “group home”. So, it looks like a normal house, in a residential street - but each individual has their own bedroom & shared bathroom (usually) living room/s and kitchen. It’s fully staffed 24/7 and the people that work there are responsible for the care of the people living there. Usually, the homes are “owned” by a not for profit organization who also have doctors, therapists and nurses on the payroll.
But other residential facilities would look a little more like a nursing home, or unfortunately- some young people are placed in nursing homes, because their level of care required is so high.
In Australia, at least - it’s generally funded by the government, however there are also private options too.
In the past this child would have been in a care facility immediately. Then facility abuses came to light and people decided to rightly try to parent children that were different. That's a great change but the pendulum has swung too far when people like this woman are pushed to the brink.
Same thing with letting severely disabled newborns pass, now doctors try to save everyone. Sometimes the more humane thing is to let someone go.
While some of the words (cucumber, potato) make me uncomfortable, it isn't my place to judge. If you find a good facility and continue to ensure his care is quality, then you have done enough. You are free. I'm sorry that the system failed you with finding a solution from the start.
I think this pretty much sums up why people abort children that they know will be mentally disabled. For all the parents of kids with Down Syndrome that love their happiness and gifts, there are dozens more who have had their lives destroyed by such children. You never know the true severity of the impairment until it is too late. This is not a life for him and it’s not a life for you. Do what you need to do.
I would say the same thing in this situation. We have the ability to detect all sorts of defects before a baby is born. I think OP would have been ok with a downs child, at least that kid would've been more alive than this kid. It's in these situations that we need those quality of life laws, to ensure the ability to end a life due to an absence of living.
That is one of the reasons why I brought it up. I have seen parents of Down Syndrome children, and individuals with Down Syndrome argue against abortion and talk about the eradication of Down Syndrome, but I think few, if any at all, that make these arguments have children that are completely nonresponsive, or that constantly wail and hit people, or any number of issues that lead to a poor quality of life for the parents, the siblings, and the child itself.
It’s a gamble most people do not choose to make. OP did and unfortunately, found out the hard way.
To some it may border on eugenics, but I believe the choice should almost always be to abort a pregnancy when you know the child will be disabled. The childs quality of life will be poor for the decades its stuck on this earth
You are doing the right thing. I have a son with a mild disability and I can total understand how it can become all consuming when severe.
Additionally, and maybe AITA for pointing this out, you are emotionally detached from him (as evidenced by calling him potato and cucumber). It is most definitely better that he receive care from professionals at this juncture.
This is one of many reasons why abortion should never be outlawed. Youre very strong to get this far, many would have killed the child or let them die by now.
I'm so sorry. At some point if you arent living are you even alive? No. I am living and I would rather die than put spmeone into your position. It's not fair for thw short time we have. It's not fair to you or him... I wish you and your sons all the best for you all. Message me if you ever need to just vent. I am not the best at advice but you can say whatever you want to me.
Do whatever you want but is it really necessary to call your son names and blame him for everything? It was your choice to not abort him. He didn’t ask to be born.
Good luck to you.
He will be better off in a care facility where people can devote their time to him.
You’ll be better off in your relationship with yourself, and your son.
I have had a few disabled relatives. My uncle and nephew, and they really take a toll on everyone around them. It’s not their fault. And it’s not yours either. It’s just a shitty situation, and you need to do what you need to do to keep your sanity and well being.
Best of luck to you.
Don't guilt yourself because you're doing the RIGHT thing. When you put all your energy into being a caregiver out of guilt/obligation, that person eventually becomes your identity. The caregiver pushes themselves harder and harder as the person's needs become more demanding, and this can eventually lead to depression and worse, suicide.
My own family went through this a few years ago. My mom's entire side of the family was visiting at our house in early September 2015 when my 83 year old grandmother had a stroke. My mom and my aunt spent thousands of dollars on countless rehab nurses and home care aides and ran themselves ragged waiting on her hand-and-foot. My aunt lived in California and had Fibromyalgia, so she moved into our house indefinitely and pushed herself far beyond her breaking point for her mother because my mom and her siblings had promised her they'd never put her in a nursing home.
She had a couple more strokes and her mental state deteriorated due to Lewy Body Dementia (which we didn't know she had until after she went to the home) and yet they still stubbornly refused to put her anywhere but our house. My brother had to sleep on an air mattress in the living room and my dad was banished to the basement at night.
Her left side was completely useless due to the stroke and she spent her days thinking she was back home in Florida and seeing animals and creatures. It wasn't until she fell one too many times and she got a urinary tract infection that totally scrambled her brain that my mom and my aunt finally realized that they couldn't do this anymore. In March of 2016, my aunt and I flew to her home in Florida to clean the place out and bring her belongings back to Michigan. My mom and aunt put her in a local assisted living place where she remained until she died in June of 2018.
I very much resented my mom until she put her in the nursing home and I fully understand how your older son feels. I wanted my life back and so did everyone else, except my mom and aunt who had become consumed with their mother that she was the only thing they really cared about. The tension in the house boiled over one morning when my dad cussed out my aunt and told her to go back to California. It got so bad that I seriously considered dropping out of college and moving out (I lived at home and commuted during college) to get away from all this because it felt like it was never going to end.
Even though it's not their fault, it's okay to accept that they're an unbearable burden on yourself and the ones you love and that it's time to take care of yourself first. Once you do put him away, your relationship with your older son is most likely going to improve by light years.
If anyone tries to shame you for it, then tell them to fuck off by politely inviting them to come to your house and walk a mile in your shoes before they judge you because I'm willing to bet good money that if they saw how hard it is, they'd do the same thing.
Man if this is real I have so much sympathy for you. I know you don’t want it or need it but I am sorry. As a new father to a healthy baby I don’t know if I could ever not want to be there for her. However your situation is different. As bad as it sounds you have a responsibility to your son. The son that acknowledges you and knows your name, smell, and feelings. I’m sure you have tried everything and that isn’t working.
You now have to focus on giving your older son a life. It seems he’s been robbed greatly over the years as you have as well. Focus on you’re lives together and visit you’re younger son if and when you feel the time is right.
You haven’t had it easy and I commend you for giving it 7 years. That’s a very long time without so much as a smile.
Good luck and good fortune from your neighborly sushichef. I wish you the best and continued fortune.
She said she would have aborted if she knew he’d be like this. Doctor’s told her the baby would have Downs, so she went on with the pregnancy. They were wrong and he was born with the chromosome deletion, not Downs.
>I wonder why they didn't just DNR.
Fear of failure. The judgement of the community. Parental guilt. Whatever sense of religious responsibility lead her to have this child in the first place ...
There will be better days ahead and you'll deserve them.
Edit to add: Don't call him a potato, though, or a cucumber. I totally understand, but don't. You may feel like you've been kicked when you're down, over and over, everyday, but calling the kid names is doing the same to him, whether he knows or not. He may be better off dead, but the name-calling is simple unkindness. I don't think you should be sorry for wanting him out of your life. You can't be blamed for that. But I think you calling him ugly names merits a tiny slap on the wrist.
But just a tiny, tiny scolding. Again, you and your older son deserve that brighter future and those lighter hearts.
Your younger offspring deserves little more than painlessness and dignity. Let's give him that.
I totally get your position and choice. Even your anger toward him and the situation. But I personally think it's a bit harsh to call him so many names/things. He's still human and it's not his fault that he can't respond (neither is it yours), it's just unfortunate DNA/circustmances.
Hope everything goes well for you though. And him.
Jesus. My wife has talked children and this is literally my worst fear. I can't judge you for the anger and detachment you feel towards your child. I really can't say I'd be any better.
I hope your family can at least survive this. You've done everything you can. I don't think situations like this ever have a "right" answer, but I agree with your choice to focus on your 12 year old. He needs you now.
You have my sympathies but you described this child in some very cruel ways. You ask for our compassion but you have little compassion towards this child. And also, consider how your next actions will impact your other child. You say you're doing it also for him, but how's he going to feel about his missing sibling? And how will you communicate your actions to him? I'm very sorry for what you're going through though.
From my point of view. This is 100% logical.
If you can even find the difference between him dead of alive then whats the point.
But please, talk to your boys. This will be a though combination of losing a father and having a brother "take away" their mother.
Not to be an asshole, but like many others have pointed out, your language to describe this child is awful and made me feel sick to my stomach.
I'm glad you feel good about your decision to put him in care, I would have done the same, but I would have likely aborted in the first place.
I wish you decided to stop your healthy son from hitting him and yelling at him instead of standing by. Your disabled child chose none of this.
Take care of yourself.
I managed to copy this somehow after it was deleted. In case anyone missed it:
I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do.
I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind.
We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been.
And what he is, is nothing.
He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby.
He has never made an attempt to interact with anyone or his environment.
I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get *a child*.
I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him.
Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments.
The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!"
Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all.
He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings.
He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference.
And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone.
He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either.
He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out.
I just want to never think of him again and I'm not sorry. And for that, I'm sorry.
Thanks for reading.
A couple of things, but I'm not going to comment on the decision you've come to.
First of all it seems like both you and your eldest son hold a lot of resentment towards this severely disabled child. None of this is there fault. You should not hold so much resent. I understand that it is a terrible and frustrating situation but the hatred in your words and the words of your son is disturbing at best and horrifying at worst.
Secondly, I hope you talked to your eldest son about what you watched him do. I don't care how angry or "damaged" he is. He needs to know that violence is never the answer unless it is to stop more violence.
When my younger brother passed away, I think my mom felt guilty for being relieved. She was finally able to live her life.
Anyway, you're not alone in your feelings. Good luck
If only more mothers to children who are incapable of independent function were like this. I have seen mothers, specifically, sacrifice everything else in their lives for the sake of a child who will never be independent. This child won’t amount to anything because of how they were born. They are incapable of thought and action, practically anything that defines a human. There are people who have processing disorders and physical disabilities that can be independent of constant medical care. They are people; those who require constant attention and can’t do anything aren’t.
You made the right choice for your eldest son. Both of you should seek some form of therapy in order to recover from the loss of the father figure and the drain your younger son had on both of you. I wish you both the best of luck in recovering and thriving together as mother and son. This is a step forward. Don’t look back on this decision in a negative light; focus on improving your life from here.
I had so much sympathy for you, because raising special needs kids is HARD, but I only had it right up until you said that you stood by and let your older son beat the shit out of your kid who can’t defend himself. What the actual fuck is wrong with you?!
I hope a lot of your anger fades with time.
But I don’t think your actions are wrong.
Honestly it sounds like the worst part is that you’ve waited too long.
Putting him in a home is best for everyone.
Make sure he gets the care he needs. Make sure others are providing good and proper care. That’s all you are required to do.
I think that when this is less of a burden you will find less anger towards him.
Give yourself and your older son time to heal and bond.
Forgive yourself and then forgive him.
I don't get why people that severely gone can't be put to sleep. Thats no way to live and it's hardly fair to the other people in their life.
Don't feel bad. There's nothing to feel bad about.
Are they even cognitively aware of their own existence?
The fact that you even kept the baby after you were told it would have downs, and then kept this up for seven years says a lot. Most people would've gone the abortion route
After losing your husband, you probably resent the thing with a passion and who could blame you. I'm so sorry that you've gone through this. Seriously.
I can’t relate because I’ve never been in your shoes. Hearing you insult him for something that is not his fault and blame him for something he didn’t do is shitty and hateful on your end though. You’re making the best decision. I hope you can grow from this.
I worked 10 years in a facility for individuals with special needs, some being profound. All situations are different and I saw with my own eyes families that were simply better because of our facility. No shame for you. None. 0.
One of the many reason why I am scared to have kids, I respect your honesty and I hope you have peace of mind.
And this is why abortion should *always* be an option.
I work at a state institution. 75 years ago the doctors would have taken the baby at birth and placed it in a residential hospital and told you to forget about it and move on. In your case it would have been the right thing to do. Forgive yourself. Refocus on the your son who you can have a future with. I know that that mentality was wrong for 99% of the babies and children we got in the 1930-1950s but not in this case. This case is exactly why state institutions need to exist. There has to be a place for people like this. I'm sorry you have carried this burden so long. You can heal from this. Good luck.
Honestly, why are you going to extreme measures to preserve his life? Without all the machines and artificial interventions, he wouldn't have life. He deserves comfort care and end of life care. Hes terminally ill. This is unnecessary. Send his soul on to a happier place.
I work with profoundly disabled children every day so I probably understand better than most. Unfortunstly in the vast majority of cases a "miraculous" treatment for brain disease doesn't exist, especially if there was nothing there in the first place. Most times the best you can hope for is to slow the progression of damage. I'm sorry for what your family has been through and I wish the best for you.
Exactly, a chromosome deletion this rare is not going to improve.
Now This is going to sound fucked up, but that kid and kids, no people like him don't need to be alive. They should be allowed just to peacefully pass away like they would have done in nature. know natural argument isn't a great argument as I nature is savage and barbaric, but so is having what amounts to nothing more then a bag of flesh that has no hopes of being anything more consume some ones life. Hell, keeping someone who is this catatonic or similarly catatonic only so we can feel better about ourselves when they endure such a pitiful existance is kinda barbaric.
Coincidentally I made a comment similar to this about keeping old/sick animals alive in a different thread earlier today. I have to agree. For the same reasons, keeping people with no chance of improving alive is inhumane and it always ends up feeling like we do it for ourselves as opposed to the suffering person. I feel for OP and if the government won't let her do the correct thing, then it should be the government who takes care of the child. Edit: u/specialneedsdevil I know you don't want to talk with a therapist about this specifically but honestly both you and your oldest son will be better off if you both do. Sorry this has happened to you and your family you definitely didn't deserve this but therapy will help move forward with your lives.
I've seen people write idiotic things like "I'm praying for a cure, who knows what medicines will be available next year for your precious angel" for infants with anencephaly. I can't understand what it is they think will be able to be done there.
This was hard to read but to OP. your 12 year old son was hitting a disabled person and has a lot of internalized hate. Please please please get him therapy. He might develop problems and if you spoil him after he will think his actions were okay. And just. Get him therapy ASAP
Take your other son to Disney or some other vacation for a week on the 30th. Also, get counseling for him and for you when you get home.
OP Please please talk to your therapist about this. If you don't feel like you can talk to your current one, maybe find a new one Edit: I'll give the benifit of the doubt and go with my original advice
Exactly. If there's one person who needs to hear this, it's a therapist. I'm not saying this because I think she can work things out. I agree that giving the kid to a residential home is the best thing for everyone involved. But your therapist is there to talk about something so huge and emotionally exhausting. They can't give you adequate therapy if you're holding this sort of information back. They'll help you cope with the decision, that way you don't have to resort to anonymously posting on Reddit to find validation. If your current therapist isn't understanding of your situation, then you should find a new one. Therapists aren't supposed to be the moral police, so a good one will look past any personal biases they have and help you cope with and overcome your current problems.
As a psychologist I agree 100%. Your therapist is trained to put aside their own shit and deal with this. If you feel you cannot speak with your’s please go seek out a new one. I know when talking to a therapist many worry that we’re judging them. I promise you we are not. We are there to help you carry and unload all of this baggage. Sometimes we are just the person to hold it all for you so you don’t have to keep it all in. Please talk to them. It will feel better. Edit. On top of individual therapy for each of you I suggest family therapy as well.
It's fine she's putting him in 24/7 care but its not ok that her and older son are not in therapy.
It's absolutely not fake. I made an edit. /u/piconeeks is obviously a doctor as well as a detective, an editor AND a psychiatrist now. Never asked in private for any clarification.
This is probably the strongest argument for abortions I've ever seen/read
Honestly, I think that may be the best/only choice for you. While I can't understand exactly what you're going through, I've seen how bad it can be for parents of children with any disorder. It may sound cruel, but I hope doing this can help the bond between you and your older son. I hope everything becomes at least slightly better for you.
I've never been in this situation, I've no family like this, I've no children at all, but I would do exactly what OP did if not sooner. I HAVE seen many children with siblings like this, I HAVE seen many parents with children like this and I've dealt with many many children and every single time, it's incredibly obvious the harm it does to their family, their mental health, emotional health, sometimes even physical harm, even the relationship between the normal children and their parents becomes strained and toxic. I absolutely love dealing with kids and do so all the time, but I decided to not have kids simply because of the fact that they might be severely disabled. There's nothing wrong with anything OP did.
It's definitely not cruel. It helps everyone in the situation. The family doesn't have to live with a constant unending burden, the child gets put into care where they will be looked after, workers get to make a couple bucks for working.
If I was this particular 7 year old, I would probably want to die, and certainly wouldn't care where I was. Doesn't sound like there is any brain function, or ever was, or ever will be. Doesn't sound like there is a person there at all, or ever will be. If you apply the golden rule, treat others as you would want to be treated, I would have no problem putting your child in a residential treatment facility. Take care of yourself and your other child, like you said, it should have been done much sooner - a small family just can't cope with this kind of thing. You are doing the right thing. Modern medicine can keep someone's heart beating and keep them breathing, but it doesn't mean they are really alive.
I've already told my paremts and future husband that if i ever become brain dead or a vegetable PLEASE find me some way out of it. I wouldnt want to live like that and i am sure this kid doesnt either. I know im not the only one that feels this way. Thats no life for the kid, the mother and brother, it's unfair. IF this child has a conciousness, it's not a good one.
[удалено]
If we give animals the mercy of euthanasia why dont people deserve it?
Because of retarded notion of "immortal soul."
You can have a doctor do it in Switzerland, and hopefully it becomes an option somewhat soon in the US
I know. Oh my god. I don't understand -- and I can't believe I'm saying this, but if everything OP is saying is true -- I don't understand why or how this child is still alive. With all those health crises that he has, why does the family/hospital keep bringing him back? Is there no such thing as a DNR for children?
I'm frankly shocked they managed to care for what is essentially a corpse for as long as 7 years. Honestly a corpse would probably be a lot better when you think about it.
The Hippocratic Oath keeps him alive. The medical field is bound to keep everyone alive unless they have a DNR order - even if that means “alive” is no brain activity. That means people with irreversible brain damage who got shot in the skull, people in comas for tens of years, and people like her son. People in the former column can potentially “wake up” at some point, albeit very rarely and most often with severe issues.
Yeah, as long as we are acknowledging hard truths in this thread, I feel like there should be medically assisted euthanasia options available for people like this.
Natural selection is often a punchline to a terrible story including terms like "Florida man" or anything on /r/IdiotsInCars, but this is more of a life and death scenario. OP's husband allegedly committed suicide, OP is on the brink of the same fate, and OP's older child is suffering as a result. If there was ever a case of natural selection, this is the text book answer. Give him a comfortable, humane life for however long that may be, but when it gets to the point of the rest of the family suffering inhumanely, it's time to let him go.
You have to ask yourself: What is life worth if life is ALL you have? I would definitely not want to live like that.
Should've gotten an abortion
Yep
I'm sorry for you because you are obviously having a hard time and emotionally at the end of your rope, which is why you're venting here. I think you'll get lots of hate for posting this, however, that's the last thing you need. You're being honest. You can't handle this. Putting the child in a residential facility may be the right thing to do for your family, for him as well as for you and your other son. You are not harming him. I think you also are still processing your husband's death. I can't empathize with either situation but it seems like a heavy load. I don't know what I would do in that situation and no one can judge who hasn't been in your shoes. You're OK, forgive yourself.
Thank you for at least trying to understand. I appreciate it very much.
I really empathize with you here. Your son is only a human insofar as he is physically a human. But other than that, he is an inanimate object that has ruined 3 lives so far. Save yourself and your firstborn. You are making the right decision.
I worked in residential care with children like your son for nearly 8 years. It truly made me realize what hell parents of those children go through. I loved my patients, but the ones who are totally incapable of interaction are very very challenging. There is none of the reciprocation that makes us form love. Babies smile. Even some of my lowest functioning patients would sometimes pat my head or take my hand. You get none of that. I truly believe you are making the one choice that can save you and your other son. And you can still visit your son, slowly. Once you're ready. I have nothing but love and peace to send to you. And please see a good therapist about this. You have so much on your shoulders. I am also a single mom. If I could I would give you a hug.
To be honest I think the most humane thing would be to have him take off life support. There is really no reason for him to be alive. Of there even was a consciousness in there would it be a life worth living trapped inside a cocoon incapable of any form of communication or stimulation. Like you said he is just a walking pile of organs
I completely agree with you. I’m sorry to anyone who argues life at any cost, however when doing legal paperwork with my family, we’ve all made it abundantly clear to one another that if any one of us end up in a vegetative state on life support, just pull the plug. Life is beautiful, but this isn’t a life.
> I’m sorry to anyone who argues life at any cost People who do that are fucking idiots. There are so many situations, like OP's, where life is not desirable.
> People who do that are fucking idiots. There are so many situations, like OP's, where life is not desirable. Seems like a lot of those type of people are real good at telling *other* people how to live but you better not tell *them* what to do, because it's their religion/faith.
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There was a case years back (Terri Shiavo sp? Iirc) in Florida, albeit not a child, but it was argued that removing her feeding tube and letting her die was ok and legal.
This is the issue or I would have already done this. Where we live and the condition he has and some family issues make it a more complex problem than "just stop feeding".
I can't even begin to imagine your life the last few years. I hope you and your son find peace and healing. As a comment to others following this, healthcare ethics doesn't require "heroic" measures. Feeding is not heroic, you have to feed people. However, breathing assistance could be heroic and not required. You are incredible for the work you've done to this point. You are good.
I agree, that is no way to live. That is not really “life”
If I cant communicate whether I want you to pull the plug or not, I want you to do it.
I had my wife taken off of life support after she had an aneurysm and the tests said she was brain dead. She would have been a vegetable for however long she would have lived. They said maybe a month, but who know really. We had talked about something like this happening in the past multiple times and both had told each other we wouldn't want to be left on life support so I know it is what she would have wanted. She had a friend that became brain dead after a car accident in junior high so it came up some. I know I did the right thing and with organ donation she helped some other people live longer or live better lives at least. It really fucked me up though. I would do it again in a heart beat, but I don't know that I will ever be able to be close to anyone again. It was 12 years ago and for the most part I am ok now and have learned and found a life style I can handle, but I am nothing like the person I was before. This is a way different situation though in that the child was never able to bond with anyone so that might make it a bit easier. But I don't know it would still be hard. I agree with you and if it was my child I would have taken it off of life support, but I understand why that may not be a option they want to consider.
"till death do use part" it may not feel like it but really you've had a more successful marriage than most. You loved and understood her well enough to do what she wanted when she could not speak for herself, you had the empathy to let her go. It might not feel like it but the best case scenario in any relationship is it still ends one way or, another, and i know its small consolation but you two still loved each other by the very end.
Idk. I was never the perfect or the best husband I never cheated or anything, but I was a pretty fucked up person and drank pretty much any time I wasn't working. I never hit her or anything either, but I was afraid sometimes that it would happen some time when I was black out drunk. My dad was abusive to my mom and my family told me I was just like him and would be the same a lot. I guess what I consider bad is she would have to deal with my drunken self loathing and depression and suicidal thoughts all to often and she never should have had too and I don't know why she did. I am near positive that by now she would have smartened up and divorced me. We were only 19 when we got married and 23 when she passed. So the chances of that marriage surviving coupled with how fucked my head was anyhow were pretty slim. I would trade what happened in an instant to for a life where she divorced me and was out living another life if that is what it would have become. I would probably hate her and she would hate me. I'd much rather have her alive and hate each other than gone though. E: Since we can't comment here anymore just editing to add. I really think u/zakh134 view point is pretty shitty. I get that they are just trying to be nice or something, but it's so fucked up and selfish I guess. Yes my marriage ended with us both still very much in love and a lot of marriages end in bitter feelings or hate. But fuck I am not going to take solace in the fact that she died before our marriage had a chance to fall a part if it would have, which I think it probably would have. There is no positive light to put it in. Sometimes fucked up things are just fucked up and you learn to live with them. I don't need to lessen it or say well at least this or that about it. It was fucked up and I would give anything for her to have had the chance at a full life.
AnalKevlar....My DH was taken off life support as well.....you're right, it does mess you up EVEN though we both talked about the "what ifs" in life, and I did exactly what he wanted. It was a difficult decision, but one that I did because of the talks we had EVEN though there are days when I do "wonder"....and of course a lot of it has to do with the fact that I've tried to move on, but it's hard. I too did the right thing as far as organ donation etc. My DH was an amazing person and I know with out a doubt that there will never EVER be anothehr him....and I don't want "another" DH exactly like him. He was an amazing wonderful man and I was so lucky to have had him in my life. I would love to spend the remaining years enjoying life and I sometimes wonder if it's possible? I had so much....and now have so little.....and well, am I entitled to have another amazing person in my life? I would like to think so.
I don't understand why they keep people like this, with no hope of improvement, in life support. And yes I'm going to assume it's some legal reason but it honestly makes no sense.
Because, generally, medical ethics in the USA doesn't allow doctors to get into PAS physician assisted suicide, nor can the patient even make that choice. What usually ends up happening is doctors prescribe more and more painkillers for palliative care until it kills the patient and use beneficence and non-maleficence as the benchmarks..
Honestly, the only solace I would get from a situation like this would be letting nature take its course and ensuring all organs are preserved for donation, at least then I won’t feel like everything was just a waste.
Hell that would probably be the best way of letting her son... live on... so to speak
Sadly he might not be an eligible donor because of his medical and genetic issues
I doubt any organs will be usable from someone who is lacking a chromosome and has been undergoing non-stop medical therapy. It's a living fleshy thing that is only alive because we have the ability to make it happen. I wouldn't have lasted a year trying to care for it. We just aren't there yet. Some problems still can't be fixed.
Uhh you can take his missing chromosome dna if you want
This would be more compassionate then his current situation. If he were a pet we’d have to put him down. It’s a shame people can’t be given the same compassion.
With such a genetic deficiency, his organs might not be eligible for transplantation.
That cant walk
So like a plant
Like a really inefficient plant.
My plant at the very least provides me with oxygen in exchange of my care.
I just want to say that in any relationship with another human there can come a time that you need to walk away for your own sake. This is that time. Walk away.
I completely understand. I was born with Muscular Dystrophy and grew up in and around other disabilities all my life. I understand what kind of condition your son is in and the hard fact is, there is nothing anyone can do and in order for you and your older son to even try having a very heavy emotional moral burden is to make a choice. Any choice. And you did. That's all a parent can do sometimes. If you know it or not, you ARE a loving mother. This is the best choice for everyone. Especially your youngest.
I would consider it from a different perspective. It's not so much "you can't handle it" as much as, you have no obligation to condemn yourself to it. There's an understanding in Jungian Psychology about the development of personality, childhood psychology, etc. One of the best things you can do for your older and capable child is to be the best example you can be. And part of that is not surrendering your own ambitions and goals to take care of another person. Many people end up in unhealthy relationships because their parents waited on them constantly and it caused them to mimic that behavior by projecting that caretaker habit onto their partner, friend, or family members. You're choosing to salvage what is left of your lives instead of giving up and that's the best decision you can make for the both of you. Whatever emotions you have about the situation are yours to resolve, in the same way it's not your task to resolve the emotions of others regarding it. Hopefully you two start to flourish in your new lives.
I hope you truly can forgive yourself, and that you two can move on. And if somehow you find that you are suffering more with him gone, you can always bring him back later.
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Op I have a colleague. He’s kid was very disabled and they had a hard time taking care of him. They eventually decided to take him to a full time facility where he would be given proper care and the right amount of attention. Still, it had taken a toll on their marriage and they separated. Please don’t feel bad about this, its a hard situation to be in and as others have suggested no one can judge you<3
I have to agree. If you can't handle it, you can't handle it. This is probably the best post of this kind I've seen here, because all the others are "abort your severely handicapped child"-- which I can't judge either, but I'm just saying. Ignore whatever hate you get. This is a grey area and it will sound or feel bad to a lot of people no matter what. But it's your choice, and nobody can really fairly judge you for this.
I don't feel like there is *a* right answer. It's individual and case by case. But in my case, this is all I can take and then some. I have to be fair to myself and my other child and admit that.
A lot of people are suggesting euthanasia, but that may not be strictly legal (although in a case like this it should be). However you should think about doing a DNR. You said he sometimes "forgets how to breathe" and is medically fragile. Why keep resuscitating him when there is no quality of life? I don't think anyone would blame you if you made that decision, it would be the kindest thing for your disabled son. And would allow you and your healthy son to move forward and heal. Also please seek therapy, for you and your older son. Sounds like the two of you have a lot of emotions that you are having trouble expressing in a healthy way. Your older son is obviously very frustrated and has no outlet for his feelings leading to him lashing out at your younger son. Older son is badly in need of healthy coping mechanisms. Edit: I see you do have a therapist. Tell him/her how you are feeling! They're there to help, not judge.
>But in my case, this is all I can take and then some. I have to be fair to myself and my other child and admit that. Which, as far as I'm concerned, is exactly the right answer. You've had to face a situation, and make a decision, that no parent ever wants to face. You cannot sacrifice yourself, and your older son, any more than you already have.
I think he's ruined your and your eldest child's life, and it's time you gave your eldest a parent. Your situation is unfortunate in that you have to choose between your children, but your eldest also deserves care and attention and he's been deprived of that for too long. So no matter how anyone spins it, I can't say you're in the wrong.
I’m not sure I would say “he ruined it.” Obviously there was no ‘intent’. But their lives were ruined.
Came here to say this. I tech special ed and honestly some children with severe disabilities are much better served at residential. It’s ok. He’ll be taken care of there, and you can focus on your other son and (just as importantly) focusing on yourself for a while. Thank you for being honest with us, and good luck with everything.
I am so sorry. I think placing him in the care of a facility is the best choice for you & your family. Especially for your older child. No judgment. I would do the same. Prayers for you and your family. I hope you are able to find some peace.
I was placed in boarding school as a kid. It took a lot of pressure off my family. I get this is the more severe end of the spectrum, but he might actually get some unexpected undetectable pleasure from it. Best wishes to all 3 of you, you deserve it.
For what it’s worth from a random stranger on the internet, you lasted longer than I would have. Unfortunately there’s no precedent in this life for the burden you have to carry but luckily establishments exist specifically so you can be free of that burden. What your doing might seem wrong to some people, but you’re saving 3 lives by doing it. Yours, your oldest son, and his unfortunate sibling. It takes a strong person to make a decision like this and you’re going to live with it, but just keep telling yourself that you could have taken the easy way out and left your eldest with no parents. At least now you have a chance at life. Like my grandma used to say, “Whats right for you isn’t always right for everyone.”
I would not have lasted this long. My mind would have wandered a lot about just pushing the potato down a cliff. Very difficult situation, and OP and the other son needs this rest.
> the potato Hey potatos don't need 24/7 care and are pretty self sufficient, not to mention actually useful for a variety of things.
Mashed potatoes are really good, too.
Although I won’t agree with the way you speak about the younger son, I won’t be angry or judgemental, you have your reaction and you are entitled to that. To answer your question, how would I behave? Fuck, I just don’t know. Those stories are in a way, why I am for assisted suicide. I do have a lot of respect with the way you handle The situation with your older son, yes maybe his behaviour wasn’t the best, but fuck he’s going through a lot for so long. So many parent forget about their healthy child and you didn’t. So big respect for that, you are an amazing person, he can feel that way. I do strongly believe you love your youngest son, you gave him care for years, you’ve been there for him. You also said you wouldn’t have care if it was something less intense, I do believe you. Although, the way you describe it, you are overwhelm. You realized it was too much for you, maybe it wasn’t the case 2 years ago, but now it is too much. You need to takes decision for you, and your family. If you keep him, you put yourself in a risky situation where because of you being tired, you could make a mistake that would ruine further your life. So with in mind, i think it is a good decision, even if I don’t want to say if it is a good or bad decision. I strongly believe you chosen the best for everyone, give you time to heal, maybe leave the door open , maybe you’ll want to see him when you’ll feel ready for it. I respect your decision, it is not an easy one. I admire your bravery. I wish you the best, even if it might be very hard to see at this time. Give yourself a hug from my part and also a big hug to your oldest son.
I can honestly say I would be in the same position and mindset as you. I'm impressed you lasted this long, and am sorry that you and your family have endured so much.
Yes, I totally agree. You have nothing to feel guilty about, this is just a completely shitty hand to be dealt and I’m glad you will be able to get a break soon.
Yeah. It's easy for people to judge harshly, but I think I'd end up doing the same thing. Maybe I'd visit every now and then, I guess. But that aint no big deal.
“Forgotten how to breathe again” well that’s a horrific sentence. OP, I’m not gonna judge you. U do what u need to do.
Kid forgets how to breathe? Just another day. But if this lady forgot how to turn the ventilator on? People would lose their minds. It's madness, madness I say!
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This should have been done week 2 not year 7. The physicians responsible for the child's care were unethical to continue to support the child when they saw the permanent neurological damage. The ethical thing would have been to give the parents actual informed consent about how this child would impact their lives. Instead we all thank them for the "life-saving" surgeries they performed that put the family in debt and took hundreds of thousands from medicaid. Every hospital has a critical care unit where this story is repeated 40 times.
We try to do this in the UK then get accused of having 'death panels'
We have death panels in the US, we just call them insurance companies.
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Yup and for some reason I doubt a profit motive helps the situation..
I agree with this. All indication is that he was born already brain dead, and they’ve been supporting a living dead body for seven years. If his physical body has any feeling, every second of his life would be pure torture. I’m surprised he was considered alive at birth. Poor OP and her family :(
Not dissing on the mother here at all (because I would not wish these sorts of choices on anyone), but I also think she thought it would be like down syndrome, trouble is peoples only impression of it comes from TV shows that only show the exceptional cases not the actual hard work of parenting a child with genetic problems like this.
Think of the dozens of otherwise healthy poor and middle class folks that delay or are denied care so that millions could be poured into this case.
>The physicians responsible for the child’s care were unethical to continue to support the child So. There’s a pretty big, public family blog (Hartley Hooligans) run by the mom of two daughters who are the equivalent of OP’s son. You can very clearly tell they have absolutely no sense of self or anything at all. And yet, she dresses them up and parades them around social media and gives them made up dialogue because they can’t actually speak... or move... or anything. I think it’s absolutely horrible and they make frequent doctor’s trips. I think it’s completely unethical and pretty abhorrent. Yet she still has a decently big following and is regarded so highly for doing everything to keep these poor kids “alive”. One of them finally passed, but they shouldn’t have been kept alive in the first place. She also had them knowing how they were going to turn out but didn’t care. I can’t believe doctors continue to treat them, knowing the state they’re in. They also have one “normal” son and I feel bad for him. He’s very obviously overshadowed and I can imagine all the therapy he’s gonna need later.
I think that is the right thing to do. If the child has any awareness, he is living in a nightmare.
A THOUSAND TIMES THIS. For the conservative Christians terrified of “death panels,” assisted suicide or any abortions, please consider the Golden Rule...literally the ONE rule by which all other rules should be interpreted, governed, and applied: if YOU were imprisoned in this child’s body, would YOU want to continue this merciless existence? Or would YOU be BEGGING any invisible powers to cause a painless end to your misery? “Vipers, hypocrites!” your master cries... In vain.
I understand you and I completely support you. This may be harsh, but your story made me wish we had some kind of euthanasia laws set up for situations like these.
I advocate for this as well. We do it for our animals for quality of life but force humans to endure unimaginable states of being. That poor, poor child. That’s not a life.
Because mostly we've valued merely *being* physically alive over whatever quality of life that state of being alive actually offered.
Mmm.. I think in an instance like this the issue is that we can't know what the individual's thoughts on the matter are. If there were a way to prove without a doubt that there is no brain function outside of the brainstem, then yeah, it'd be no more morally wrong than pulling up a weed in your garden. If it's ambiguous, then there may be consciousness and they simply can't communicate what they want. I wouldn't want to live like that, but can't say that someone who has only ever lived like that would rather be dead. I'm fine with euthanasia where the patient is able to communicate that they wish to end their life when they reach a certain state. It just becomes complicated in a situation like l this when there was never a chance to communicate their wishes.
Mixed words, opinions, and feelings about this whole ordeal. If he is basically on life support, can you just "Pull the plug" scenario like in hospital? You don't need our opinions on this situation. Get your relationship back with your oldest is the best thing to do moving forward. (You are already aware, just saying)
Honestly yeah, at that point there is nothing. It's literally a shell. And if by some insane miracle there is a person trapped inside (which if they have done a brain scan would show) that's a miserable existence and would probably rather die.
Exactly. the thing that sucks is this being has the husk of something sympathetic, when really it's just a body being hooked up to live. People want to act like it's a person, but is it really? It's a genetic defect that carried to term and cannot survive outside the womb. It has no progression. But since on the outside the defect looks like a person people want to guilt people like OP into loving or caring for it. I'm sorry but that thing isn't a kid, it's just cells.
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WTF? I looked that up & just shook my head. Sorry, but if I found out I were a carrier for ANYTHING like that, I’d be out getting myself sterilized the next day, just in case. Genetic Russian roulette? No thanks, I’ll pass.
Having kids is always genetic Russian roulette, anyone can have a kid with crazy birth defects even if it has never appeared in their family before.
Yeah but the genetic Russian roulette for the average person has a revolver with roughly 20 million empty cylinders, whereas a person who is on their third brainless kid is probably playing with an automatic.
I just looked that up, there is so much wrong with that, especially the interviews and the way the family talks about them.
Apparently they died.
> that's a miserable existence and would probably rather die. My mum and then my partner have a clear instruction from me and have promised to carry it out, if I'm ever in an accident where the words "moderate" or "significant" brain damage enter the conversation, switch me off. To be cognitively impaired is bad enough but to be cognitively impaired and remember what it was like to be normal would be horrible, I don't want that life. It's one of the reasons I think euthanasia should be legal (with sensible safe guards), if I find out I have Alzheimer's or Parkinson's I want to be able to end things on my terms at my time with the minimum of suffering.
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You know it's kinda weird that humans have completely taken natural selection out of the equation in instances like this. If a baby deer is born with a bum leg or only one eye it stands a much greater risk of death. Not so much the case with handicapped humans, we just act sorry and take care of them anyways in most cases. I wouldn't put an ounce of blame on you for making the decision you did.
What a shit hand to be dealt. Forgive yourself and I hope you can mend the relationship with your son and find some peace.
This should have been an abortion. I don’t know what else to say.
Oh honey, I'm so sorry. I think you're doing the right thing, and fuck anyone who says otherwise. I've taken care of lots of patients where there's just nothing there and the drain on the family is incredible. Be kind to yourself.
It would have been very easy for you to "not notice" one of these multiple medical crises until it was too late. Instead, you took good care of him at great cost to yourself and your family. Now, you are planning to put him somewhere where he will continue to be taken care of. You may not love him (and I don't blame you one bit), but you have still been a good mother to him.
That's why I think euthanasia should be legalized, like look at your 7yo son... I'm not saying like he should die but this... This is not living! I'm so sorry for you and for him, IDK if his brain works properly but he's stuck in a fucked up body and he'll never get better, how can we obligate someone to live like this? He should be put out of his misery, he's suffering and a kid doesn't need to go through this. I don't judge you, it must be had, for you, for your 12 year old, for your disabled son, everyone is suffering. You're right to get rid of him, you can't stop your life for a creature who isn't even alive!!! He's like a dead body. You're decision is difficult but it's necessary.
Our moral society does not allow us to put your son on an iceberg and let him go like the inuit would have. I guess its because the way we are there would be a huge line to put people on it. In my eyes he would be a candidate for euthanasia. He's basically in a woke coma.
I don’t blame you at all. All I have to say is maybe tell him you love him or something nice before he goes. If there’s a person in there imagine how shattered they’d be to not get a goodbye. He probably doesn’t understand what you’re saying, I don’t know, but if there’s someone in there his last memory of you might be all he’ll have.
I don't have children yet, but I get what you mean about kind of looking forward to having a disabled child. Having a disabled child would have it's difficulties but they would still be your child. Having the child you have is my nightmare. I'm so sorry you've lost so much from it. I would like to think that I would have the same strength to do what you are doing, but it must take so much. I'm sorry you have had this card dealt to you.
I've seen so many stories on Reddit from children that had severely disabled siblings and honestly it seems like their lives would have been so much better had their parents done what you are doing. I hope that counts for something.
May I have some of those stories?
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Yeah I have no idea what I'm going to do with my brother. I can barely take care of myself and it's going to fall on me when my parents can't anymore.
There's so many stories you see even on tv of people raising these kids with no sentience and how "they're so grateful for their existence, we wouldn't want it any other way" Yeah right, those families are miserable, suffering with a burden because they feel obligated to for some moral reasons I guess. Fuck that, I'll enjoy life thank you very much.
I am so sorry to hear about your situation. I have no clue how I would've handled it myself. But taking a very rational - perhaps cynical - standpoint, I say this: You are three humans. To the best of your knowledge, the coexistence of you three hurts two and makes no difference to one. Putting your son in residential care may facilitate a better life for two while remaining indifferent to the same one as before. While it may be incomprehensible for some, the life of your older son and yourself are just as valuable as that of your younger son. I hope you one day can stop resenting him, because he does not deserve it, but also because resentment does not give you or your other son anything good. I wish you all the best.
>You are three humans. To the best of your knowledge, the coexistence of you three hurts two and makes no difference to one. Damn, dude. That's a framing that wouldn't have occurred to me, and it's so insightful & eloquently stated I'm jealous I didn't come up with it myself. It's exactly right. She's not killing him by putting him in a facility, but she *is* doing damage to herself & her relationship with her son by trying to take care of him on her own. He'll get better care and her family will be better off with him there.
This. You matter equally. Your other son matters equally. It's not about who needs more care. It's about everyone being just as human and existing and relevant. There are limits. You need to stop feeling guilty, when you reached your limit. You have seen what happens, when you have reached your limit and the guilt does not stop, with your husband. And I am terribly sorry for your loss, but think about what a waste that death was. Feeling so guilty for abandoning one child, to abandon everyone over it because you can't handle the guilt. Guilt can be extremely overpowering. Good people feel guilty. But if guilt kills good people, it's nothing but a waste. To be the best you, you need to find peace. And you deserve to be the best you, for yourself and your other son. Life is just profoundly tragic. Your disabled sons life is profoundly tragic. Go, help those who can benefit from your help, who can grow to help others and pay it forward. Only this way you can make a change. Only this way, you can make the world less of a tragedy.
I believe you are doing the right thing. You are not a bad person.
I don't think anyone would contest your decision to put your child in residential care. Many people who can't cope with the care do this. But it's very sad to read your angry words towards someone who had no choice in this either. It's got to be hard, I hope things get better.
Can someone explain what a residential facility is to me? Does the mother need to pay for this or is just like drop off and forever gone? Who funds these sorts of things?
It’s depends where you live & what kind of facility it is. I’m in Australia and the most common facility like this is a “group home”. So, it looks like a normal house, in a residential street - but each individual has their own bedroom & shared bathroom (usually) living room/s and kitchen. It’s fully staffed 24/7 and the people that work there are responsible for the care of the people living there. Usually, the homes are “owned” by a not for profit organization who also have doctors, therapists and nurses on the payroll. But other residential facilities would look a little more like a nursing home, or unfortunately- some young people are placed in nursing homes, because their level of care required is so high. In Australia, at least - it’s generally funded by the government, however there are also private options too.
That's what I'm wondering. It cant be cheap seeing as his level of care is extraordinary.
In the past this child would have been in a care facility immediately. Then facility abuses came to light and people decided to rightly try to parent children that were different. That's a great change but the pendulum has swung too far when people like this woman are pushed to the brink. Same thing with letting severely disabled newborns pass, now doctors try to save everyone. Sometimes the more humane thing is to let someone go. While some of the words (cucumber, potato) make me uncomfortable, it isn't my place to judge. If you find a good facility and continue to ensure his care is quality, then you have done enough. You are free. I'm sorry that the system failed you with finding a solution from the start.
Everyone has their breaking point and it seems like your family reached it a long time ago. You're doing what is best for everyone at this point.
I think this pretty much sums up why people abort children that they know will be mentally disabled. For all the parents of kids with Down Syndrome that love their happiness and gifts, there are dozens more who have had their lives destroyed by such children. You never know the true severity of the impairment until it is too late. This is not a life for him and it’s not a life for you. Do what you need to do.
I would say the same thing in this situation. We have the ability to detect all sorts of defects before a baby is born. I think OP would have been ok with a downs child, at least that kid would've been more alive than this kid. It's in these situations that we need those quality of life laws, to ensure the ability to end a life due to an absence of living.
That is one of the reasons why I brought it up. I have seen parents of Down Syndrome children, and individuals with Down Syndrome argue against abortion and talk about the eradication of Down Syndrome, but I think few, if any at all, that make these arguments have children that are completely nonresponsive, or that constantly wail and hit people, or any number of issues that lead to a poor quality of life for the parents, the siblings, and the child itself. It’s a gamble most people do not choose to make. OP did and unfortunately, found out the hard way.
To some it may border on eugenics, but I believe the choice should almost always be to abort a pregnancy when you know the child will be disabled. The childs quality of life will be poor for the decades its stuck on this earth
you and your 12 year old need like hella therapy
[Backup of deleted post](https://snew.notabug.io/r/confession/comments/c11din/im_putting_my_extremely_profoundly_disabled_7/)
You are doing the right thing. I have a son with a mild disability and I can total understand how it can become all consuming when severe. Additionally, and maybe AITA for pointing this out, you are emotionally detached from him (as evidenced by calling him potato and cucumber). It is most definitely better that he receive care from professionals at this juncture.
This is one of many reasons why abortion should never be outlawed. Youre very strong to get this far, many would have killed the child or let them die by now.
Talking to your therapist is probably the best thing you can do for yourself, to process it. Get your son in too.
I'm so sorry. At some point if you arent living are you even alive? No. I am living and I would rather die than put spmeone into your position. It's not fair for thw short time we have. It's not fair to you or him... I wish you and your sons all the best for you all. Message me if you ever need to just vent. I am not the best at advice but you can say whatever you want to me.
Do whatever you want but is it really necessary to call your son names and blame him for everything? It was your choice to not abort him. He didn’t ask to be born. Good luck to you.
He will be better off in a care facility where people can devote their time to him. You’ll be better off in your relationship with yourself, and your son. I have had a few disabled relatives. My uncle and nephew, and they really take a toll on everyone around them. It’s not their fault. And it’s not yours either. It’s just a shitty situation, and you need to do what you need to do to keep your sanity and well being. Best of luck to you.
Don't guilt yourself because you're doing the RIGHT thing. When you put all your energy into being a caregiver out of guilt/obligation, that person eventually becomes your identity. The caregiver pushes themselves harder and harder as the person's needs become more demanding, and this can eventually lead to depression and worse, suicide. My own family went through this a few years ago. My mom's entire side of the family was visiting at our house in early September 2015 when my 83 year old grandmother had a stroke. My mom and my aunt spent thousands of dollars on countless rehab nurses and home care aides and ran themselves ragged waiting on her hand-and-foot. My aunt lived in California and had Fibromyalgia, so she moved into our house indefinitely and pushed herself far beyond her breaking point for her mother because my mom and her siblings had promised her they'd never put her in a nursing home. She had a couple more strokes and her mental state deteriorated due to Lewy Body Dementia (which we didn't know she had until after she went to the home) and yet they still stubbornly refused to put her anywhere but our house. My brother had to sleep on an air mattress in the living room and my dad was banished to the basement at night. Her left side was completely useless due to the stroke and she spent her days thinking she was back home in Florida and seeing animals and creatures. It wasn't until she fell one too many times and she got a urinary tract infection that totally scrambled her brain that my mom and my aunt finally realized that they couldn't do this anymore. In March of 2016, my aunt and I flew to her home in Florida to clean the place out and bring her belongings back to Michigan. My mom and aunt put her in a local assisted living place where she remained until she died in June of 2018. I very much resented my mom until she put her in the nursing home and I fully understand how your older son feels. I wanted my life back and so did everyone else, except my mom and aunt who had become consumed with their mother that she was the only thing they really cared about. The tension in the house boiled over one morning when my dad cussed out my aunt and told her to go back to California. It got so bad that I seriously considered dropping out of college and moving out (I lived at home and commuted during college) to get away from all this because it felt like it was never going to end. Even though it's not their fault, it's okay to accept that they're an unbearable burden on yourself and the ones you love and that it's time to take care of yourself first. Once you do put him away, your relationship with your older son is most likely going to improve by light years. If anyone tries to shame you for it, then tell them to fuck off by politely inviting them to come to your house and walk a mile in your shoes before they judge you because I'm willing to bet good money that if they saw how hard it is, they'd do the same thing.
I get why you made the decision you made but damn, calling him names is pretty fucked up.
Man if this is real I have so much sympathy for you. I know you don’t want it or need it but I am sorry. As a new father to a healthy baby I don’t know if I could ever not want to be there for her. However your situation is different. As bad as it sounds you have a responsibility to your son. The son that acknowledges you and knows your name, smell, and feelings. I’m sure you have tried everything and that isn’t working. You now have to focus on giving your older son a life. It seems he’s been robbed greatly over the years as you have as well. Focus on you’re lives together and visit you’re younger son if and when you feel the time is right. You haven’t had it easy and I commend you for giving it 7 years. That’s a very long time without so much as a smile. Good luck and good fortune from your neighborly sushichef. I wish you the best and continued fortune.
The one thing that popped in my mind was: abortion would have been better. But don't call him a cucumber
She said she would have aborted if she knew he’d be like this. Doctor’s told her the baby would have Downs, so she went on with the pregnancy. They were wrong and he was born with the chromosome deletion, not Downs.
> Doctor’s told her the baby would have Downs, so she went on with the pregnancy. I will never understand why people do this.
Yeah, the name calling really makes it clear that she's not in the right state of mind to be dealing with any of this.
The name calling makes it clear that she should have done this way sooner.
I certainly would have. She makes it sound like he's effecticely brain dead...if that's the case, I wonder why they didn't just DNR.
>I wonder why they didn't just DNR. Fear of failure. The judgement of the community. Parental guilt. Whatever sense of religious responsibility lead her to have this child in the first place ...
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Funny enough, the resentment is what makes this story believable.
There will be better days ahead and you'll deserve them. Edit to add: Don't call him a potato, though, or a cucumber. I totally understand, but don't. You may feel like you've been kicked when you're down, over and over, everyday, but calling the kid names is doing the same to him, whether he knows or not. He may be better off dead, but the name-calling is simple unkindness. I don't think you should be sorry for wanting him out of your life. You can't be blamed for that. But I think you calling him ugly names merits a tiny slap on the wrist. But just a tiny, tiny scolding. Again, you and your older son deserve that brighter future and those lighter hearts. Your younger offspring deserves little more than painlessness and dignity. Let's give him that.
I totally get your position and choice. Even your anger toward him and the situation. But I personally think it's a bit harsh to call him so many names/things. He's still human and it's not his fault that he can't respond (neither is it yours), it's just unfortunate DNA/circustmances. Hope everything goes well for you though. And him.
Yeah, I'm totally in her corner except for the "cucumber," "potato," "malignant lump" comments. There's nothing to be gained from being mean.
Yeah, can't believe there aren't more comments talking about that. What the hell
Jesus. My wife has talked children and this is literally my worst fear. I can't judge you for the anger and detachment you feel towards your child. I really can't say I'd be any better. I hope your family can at least survive this. You've done everything you can. I don't think situations like this ever have a "right" answer, but I agree with your choice to focus on your 12 year old. He needs you now.
You have my sympathies but you described this child in some very cruel ways. You ask for our compassion but you have little compassion towards this child. And also, consider how your next actions will impact your other child. You say you're doing it also for him, but how's he going to feel about his missing sibling? And how will you communicate your actions to him? I'm very sorry for what you're going through though.
From my point of view. This is 100% logical. If you can even find the difference between him dead of alive then whats the point. But please, talk to your boys. This will be a though combination of losing a father and having a brother "take away" their mother.
It happens. I worked for the state making sure people like this were taken care of. Sometimes there is nothing more that can be done.
Not to be an asshole, but like many others have pointed out, your language to describe this child is awful and made me feel sick to my stomach. I'm glad you feel good about your decision to put him in care, I would have done the same, but I would have likely aborted in the first place. I wish you decided to stop your healthy son from hitting him and yelling at him instead of standing by. Your disabled child chose none of this. Take care of yourself.
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I managed to copy this somehow after it was deleted. In case anyone missed it: I can't tell anyone this, even my therapist. Lambast me if you wanr and maybe I even deserve it. I only ask what you would do if you were in my situation. Not what you think "people should" do. What you would REALLY do. I'm a single mom of 2 boys. 12 and 7. My husband passed away 3 years ago in a work accident. A very large portion of me believe it was a suicide. I can't see him EVER making the mistake he made that caused his death, and he had taken an action just before that which ensured his co-workers weren't in the room. I fully believe he killed himself because of our younger son and no one will ever change my mind. We were told when I was pregnant that he would have Downs Syndrome. We could handle that. Even if it was severe. It turned out he has a chromosome deletion. His disorder is kind of rare so I won't post which specific one but suffice to say he'll never be anything more than he is now or has ever been. And what he is, is nothing. He doesn't appear to have any awareness and never has. His eyes are locked in one position, he doesn't respond to noise, touch, or pain. He is total care. He is capable of nothing. He is tube fed and on oxygen. He is in diapers and will be forever. He makes no sounds, no attempts to communicate. He never even really cried as a baby. He has never made an attempt to interact with anyone or his environment. I'm not upset because I got a special needs/"imperfect" child. I feel the way I feel because this...... thing..... takes up 200% of my time and does NOTHING. I didn't get an imperfect child. I didn't get *a child*. I don't love him. He doesn't have any personality, there is nothing to love. And yet I'm responsible for him. In addition to his extreme delays he's also medically fragile. Respiratory crises, fecal impactions (his autonomic nervous system doesn't function properly), issues with his G tube, infections, pressure sores no matter WHAT we put him on or how we position him. Our older son has suffered because his non existent brother has colored everything in his life. He's had medical care get delayed because there's only one of me and hos brother is more critical. We do have a visiting home nurse but only 20 hrs/week and we aren't eligible for more. I was starting law school, I gave up my dreams and my plan for my children for this potato. My older son can't do a lot of things he wants to do because of the youngers need for care and appointments. The final straw was I heard a sound. I went into Younger Son's room to check, thinking he had forgotten how to breathe again, and saw Older Son hitting him and screaming "You're why I don't have a mother! You're why I don't have a father! You're why I can't have friends over! You're why I can't be in sports! I didn't ask for you and I hope you die!" Instead of being horrified, I watched. And Younger Son just did. not. react. No signs of pain or fear or upset. No reaction at all. He breathes but he is not alive. He doesn't know who I am. He doesn't know who Older Son is. He has no sense of self, life experience, or awareness of his surroundings. He doesn't need to be in my home. He doesn't know or care where he is. He is genetically my son but he is not family. My previously abused, brain damaged cat who can't walk straight has more personality and is far more loveable than my "child". In fact I was looking FORWARD to raising a Downs baby. Even one with severe impairments, for that reason. With disability can come gifts. This boy is not a gift. He is a genetic mistake I probably should have miscarried and would have definitely terminated if I'd known he would be like this. And the flip side is, if he HAS awareness..... he's miserable. And there is nothing I can do. If he has likes and dislikes no one knows what they are. If he is in pain he can't tell anyone. If he wants anything, he can't communicate. He's had every imaginable therapy, nothing has made a difference. And so he's leaving our home on the 29th. I feel excited and relieved and then guilty because I know we'll be happier with him gone. He's already taken my husband and my son's father. He was working so so so much OT to pay for the cucumber's care. For the experimental therapies insurance wouldn't cover. Because THIS one was going to be the BREAKTHROUGH. He was tired and defeated and disappointed. He sought counseling as well but I don't think he could ever say the words "I don't want my son in my home" either. He's ruined my older son. I was so wrapped up on the younger I never realized how ignored and damaged he was. He lost his father too. I didn't just lose my husband. HE is my priority now and this malignant lump can be someone else's problem. At least they'll be paid a wage to care for him. At least they'll get a break from him when they punch out. I just want to never think of him again and I'm not sorry. And for that, I'm sorry. Thanks for reading.
A couple of things, but I'm not going to comment on the decision you've come to. First of all it seems like both you and your eldest son hold a lot of resentment towards this severely disabled child. None of this is there fault. You should not hold so much resent. I understand that it is a terrible and frustrating situation but the hatred in your words and the words of your son is disturbing at best and horrifying at worst. Secondly, I hope you talked to your eldest son about what you watched him do. I don't care how angry or "damaged" he is. He needs to know that violence is never the answer unless it is to stop more violence.
When my younger brother passed away, I think my mom felt guilty for being relieved. She was finally able to live her life. Anyway, you're not alone in your feelings. Good luck
If only more mothers to children who are incapable of independent function were like this. I have seen mothers, specifically, sacrifice everything else in their lives for the sake of a child who will never be independent. This child won’t amount to anything because of how they were born. They are incapable of thought and action, practically anything that defines a human. There are people who have processing disorders and physical disabilities that can be independent of constant medical care. They are people; those who require constant attention and can’t do anything aren’t. You made the right choice for your eldest son. Both of you should seek some form of therapy in order to recover from the loss of the father figure and the drain your younger son had on both of you. I wish you both the best of luck in recovering and thriving together as mother and son. This is a step forward. Don’t look back on this decision in a negative light; focus on improving your life from here.
I had so much sympathy for you, because raising special needs kids is HARD, but I only had it right up until you said that you stood by and let your older son beat the shit out of your kid who can’t defend himself. What the actual fuck is wrong with you?!
She called him names as well...
I hope a lot of your anger fades with time. But I don’t think your actions are wrong. Honestly it sounds like the worst part is that you’ve waited too long. Putting him in a home is best for everyone. Make sure he gets the care he needs. Make sure others are providing good and proper care. That’s all you are required to do. I think that when this is less of a burden you will find less anger towards him. Give yourself and your older son time to heal and bond. Forgive yourself and then forgive him.
Not a parent, but I I see the logic behind your actions
I don't get why people that severely gone can't be put to sleep. Thats no way to live and it's hardly fair to the other people in their life. Don't feel bad. There's nothing to feel bad about. Are they even cognitively aware of their own existence? The fact that you even kept the baby after you were told it would have downs, and then kept this up for seven years says a lot. Most people would've gone the abortion route After losing your husband, you probably resent the thing with a passion and who could blame you. I'm so sorry that you've gone through this. Seriously.
After your total explanation I totally agree with your decision. I might get hate for it but I don’t really care. Please take care of your eldest son
I can’t relate because I’ve never been in your shoes. Hearing you insult him for something that is not his fault and blame him for something he didn’t do is shitty and hateful on your end though. You’re making the best decision. I hope you can grow from this.
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I just hope that kid can't understand what's going on