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)
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)