There was a NAMI special on the other day and on the panel was a woman with, I believe a doctorate of some kind, who suffers from schizophrenia. She was wonderfully insightful, intelligent, articulate and helpful.
Of course, each person who suffers with an illness, suffers individually. And we do know that early onset illness often times means more difficulties and a worse prognosis.
However, possibly adding to the severe and heartbreaking dilemma's caused by the complexities of disease, could be some learned behaviors.
So, although, no doubt, it would be extraordinarily difficult to attempt to teach this child how to act appropriately in social situations (when they are resisting) and what the parents could do would probably be limited, I do wonder if further efforts could be made to direct or redirect the child (as appropriate). I'm not saying that it would be the same as with a healthy child, but I think when you are exhausted, one often makes the decision to give up out of necessity and it would be a shame if that is the way it is permanently.
It is very likely that the parents might need some assistance...at least on occasion. No doubt that right now they are simply in survival mode.
It wasn't clear to me if the parents have looked into the possibility of receiving any funding because they have a special needs child, with this degree of disability.
I know our situation wasn't this bad, but even when our daughter had brain surgery and was very ill (on top of her other diagnosis's), the only help I got was with reference to the school system and that was only for a year.
At our church, we have a family with- a severally autistic child, and the entire church has chipped in services off and on, including the purchase of a special guide dog that cost thousands of dollars.
husband and I ended up going to marriage counseling at some point, more as a preventative tool AND to get ourselves out of constant survival mode. It just is NOT a healthy place to live in. We needed someone to sort of give us a gentle push and gently force us to make some difficult decisions. We still had more responsibilities because we had a difficult child and freely accepted them, but understood that we had to responsibly and safely give ourselves a break when and where we could.
I DO wish Oprah had provided some sort of outlet/vehicle to raise funds for this family....some sort of logical way to channel monies for (an example) two nurses to come to the house once a month ( ...just brainstorming) to watch the kids so the parents could go out. Perhaps someone will watch the show and call in and offer to help in some way.
I noticed that on a show about the Fla. murders, she (Oprah) did something like that...not very specific...but she did encourage donations to the surviving family.
Ultimately, these poor parents will have to figure out a way to make their complicated lives better. They are doing the best they can and are doing a remarkable job, but I do suspect that down the road, their current system will not hold them and I do hope that others will step in and provide assistance in one way or another.