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As someone in a similar situation, I really need to vent. Many people look at a situation like this and don't consider the work that goes into maintaining an e

As someone in a similar situation, I really need to vent. Many people look at a situation like this and don't consider the work that goes into maintaining an extremely disabled individual. Combined mental and physical disabilities for an adolescent are a full time job. In some cases(mine) you cannot leave your child alone. Ever. Someone always needs to be at home when they're at home. Or out with them when they are invited out. Its suffocating. When you want to go out, its the pain of arranging a baby sitter but instead of a teenager its a professional who needs 2 weeks advance notice. 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. Its terrifically frustrating to never see your son or daughter when you've given 12 years of full time care for them to do so. Also, the bit on the 'big picture'. Unless you're looking for an unpleasant conversation, don't bring it up. There's two options for the future, they die and you realize your life is gone; or you die and they are never going to receive the same level of care and attention. (If you can identify me from this post, I'd appreciate if you didn't out me)

hnaccy 9y ago
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.
- coldtea 9y ago
  Help whenever possible?
- goldenkey 9y ago
  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.
r00fus 9y ago
Brutal but true. Caring for someone with developmental challenges is a calling that not many can handle.
hycaria 9y ago
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.
- humanrebar 9y ago
  I don't understand the question. Are you asking why someone wouldn't abort their child?
  - hycaria 9y ago
    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.
    - endangered 9y ago
      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.
    - gowld 9y ago
      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.
      - hycaria 9y ago
        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.
neom 9y ago
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.
squidbot 9y ago
"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!

hnaccy 9y ago

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.

coldtea 9y ago
Help whenever possible?
goldenkey 9y ago
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.

r00fus 9y ago

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

hycaria 9y ago

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.

humanrebar 9y ago
I don't understand the question. Are you asking why someone wouldn't abort their child?
- hycaria 9y ago
  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.
  - endangered 9y ago
    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.
  - gowld 9y ago
    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.
    - hycaria 9y ago
      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.

neom 9y ago

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.

squidbot 9y ago

"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!