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I do consider the work that goes into it but I don't understand what I can do about it.

It's like encountering a person lugging an enormous cross on their back, beyond gawking at the cross and chatting about how heavy it must be I'm not sure what I'm supposed to do.

Talk about the weather, talk about current events, talk about video games, normal stuff..? People don't want to be reminded of the curse they've been afflicted with, especially if it isn't going to help change it. This goes for anyone who has a handicap. The handicap is always on a scale of 1 to 10 where at 1, it doesn't define the person, and at 10, their whole lifestyle is constrained. But nomatter what, no one on that scale wants to be reminded of a curse that is so vicious it affects so much of their life. Treat them as a person first, and maybe if you get to know them, then you can ask about the affliction.

Help whenever possible?

On the contrary, I do consider the work and can't help but wonder : why do you do this ? Is it pleasurable ? Is it out of hope ? Because not all parents of disabled children/people go that path, and I can't imagine blaming someone that decides that giving up everything in life for a lost cause isn't worth it.

I don't understand the question. Are you asking why someone wouldn't abort their child?

This is not always possible, and that's not what I meant (although there's still abandon in the same vein).

There are institutes where they can be housed and cared for, instead of having to care for them 24/24, at least where I live. Most end up there by adulthood anyways, considering how hard it is to care for adults compared to children, especially when you're aging, and come back for week ends or the like.

It's incredibly expensive to do this. Most people can't afford it especially since one of the parents generally has to spend most of their time with the child forgoing work.

Yes, there are programs in most states to help the parents in this sort of situation, but most of these programs let the benefits run out when the child reaches around 21-25 years of age.

Maybe you have children, and maybe you don't, but in general the human race's survival is in large part due to parents having a deep emotional bond with their children.

One must really think very low of it's own life to enslave himself that way, that's all I'm saying. And when I see such posts or parents testimonies, they all seem fed up with their situation, and rightfully so. And it's not all because of society, and they do have a choice.

Of course, but that's what parenting is, to a huge fraction of people -- it's innately recognizing that children displace parents, generation after generation. It's not because of society, it's the cause of society.

But we're talking about children that are not going to displace their parents, because of short life expectancy, or absolute dependency on others, or limited intellectual capacities...

My mom is a special educator and she mainly works with autistic children.

She had this one child that was severely non-verbal, she did everything in her power to get the County school system to do the right thing but they refused to give her the classes she needed. So, long story short, the parents refused to give up and told their Pastor. The Church went to court and won and the kid got their services. The kid afaik is still non-verbal but is doing much better.

When my mom asked the pastor, why the church went to bat was because they had hope that the kid would get better and it was the right thing to do.

Now, I say all this to say this, that people will do what they think is right. They want their best for their children just as the parent who stubbornly got their church to go to bat for them. And the parents who put their children in homes want the best quality of life.

And I don't necessarily see them as giving up, we perceive that, but I feel deep down, they aren't. They want whats best for their kid.

Because there's an emotional attachment, because you realise that, while the child may not be able to to enjoy the full range of what life has to offer, in the majority of cases the support and love that you have to offer will be better than the care offered by an institution. The momentary smile is quite rewarding.

I get this, and I’m sure if my kid was in this situation I’d feel the same way. For all of the kids who aren’t mine though, I can see the other poster’s point. That’s just as much a part of being human as being attached to your own offspring.

In other words, I’m not going to stare, or look away from a disabled kid. I’m also not going to invest emotionally, or go out of my way to change how I think and act day in and out for them. If someone asks me for help, I’ll help, but they’re not likely to register for me otherwise. I won’t look away, but I also won’t look; disability doesn’t make me more or less invested in strangers.

>why do you do this ? Is it pleasurable ? Is it out of hope ?

How about they are people of the same dignity as anyone else?

I think the fundamental disconnect here is that there are, honestly, perfectly rational reasons to not do this.

A dear friend of mine in high school has a sister with Downs Syndrome who is 13 years younger than she is. My friend's parents have missed out on so much of what most people view as the good parts of life.

They missed my friend's college graduation because her sister refused to go. Literally, "we can't make it because your sister doesn't want to go." They missed their son's wedding and the birth of his first child because of this as well.

They have to spend tens of thousands of dollars a year on care to be able to work, and they can't quit their jobs to care for her because of insurance and income reasons. They are both well into retirement age at this point and they are forced to work demanding jobs still.

It's put a strain on the entire family, and the only time my friend's life is ever discussed in any way is when she's making 'wrong' choices. When she graduate college, she didn't get so much as a congratulations; when her brother married, he and his wife received a rushed phone call congratulating them and nothing more.

I am fully on board with the idea that there is an essential dignity to all people, but I think that asking why people make these choices is still a completely valid question to ask, especially when you consider the blatantly deleterious effects that such a choice can have. Even if for no other reason than understanding, this is an important question to ask.

Kind of a rude response to an honest question. The point of the question is that taking care of a severely disabled child takes some dignity out of the parent's life. Their whole world for however long that child is alive is about that child and only that child. It's appropriate to ask what the motivating factor is, because the answer isn't always obvious to someone who doesn't have to think about taking care of a disabled child.

This post brought me to tears, and made me feel incredibly guilty. First: Thanks for the work you do and for being such a decent human. Second, will heed your advice strongly and make an effort to also invest in the labour of yourself and folks like you, my apologies for not being cognizant of this till fact my 32th year.

"Like this article says: for fucks sake, do invite them out. Do try to engage them in mental-age appropriate activities. That's the entire reason people sacrifice their lives for them, to give them the opportunity to be alive." I've got to say thanks for writing this and making me think about that. It's a great perspective that I don't have as a dad to kids with no special needs. I'm sharing both this article and your comment with my family, because we're as guilty as everyone else in this society of being in the "don't stare" class but not doing much else. And beyond just sharing it, we're going to really try to take it to heart. There are certainly kids and families we need to make an effort to be friends with!

Brutal but true. Caring for someone with developmental challenges is a calling that not many can handle.