I appreciate your honesty LindaNJ. You are nothing if not that.
I tend to feel that you are getting a picture of a feral child running loose in that room ripping up carpeting and smearing feces on everything 24/7. And that may have been the reality. Where I am stuck is WHY was that the reality?
I have been doing some reading on fragile X children and while they can exhibit severe autism, those patients can be helped, through intervention, education, therapy, medication and most of all lots of work WITH the child to alter those behaviors such as the fecal smearing, etc.
As with any child on the autistic spectrum, there are many many resources that this family apparently opted NOT to avail themselves of which could have meant Jarrod being potty trained or in the alternative Jarrod learning to modify his behavior and not play in his feces,
Most children with Fragile X, including those with severe mental retardation, are guaranteed free, appropriate public education under federal law. Public Law 105-17: The Individuals with Disabilities Education Act-IDEA (1997) makes it possible for children with disabilities to get free educational services and educational devices to help them learn as much as they can. Each child is entitled to these services from age three through high school, or until age 21, whichever comes first. Also, every state operates an early intervention program for children from birth to age three; children with Fragile X should qualify for these services. The law also states that children must be taught in the least restrictive environment, appropriate for that individual child. This statement does not mean that each child will be placed in a regular classroom, but instead, that the best combination of one-to-one tutoring, small group work, and regular classroom work will be arranged.
SNIP
A child with Fragile X should be evaluated and re-evaluated on a regular basis by his or her special services team. In this way, the team can determine how the child is doing and whether any changes are needed in his or her treatment (for instance, changes to the IEP, changes in classroom placement, or changes in other services) to ensure the child is getting the best possible care.
http://www.medicinenet.com/fragile_x_syndrome/page12.htm#educational_options
Speech, occupational, physical, and behavioral therapy all were available to this child via the school system by law IMO. So while I see your point and your horror at this story is mine as well, the sympathy I am having a harder time with.
I strongly feel that Jarrod was as unmanageable through these parents own fault by consciously deciding to lock him up in that room and write him off simply hosing down the child and the room when the smells became too much. And that in my opinion was a choice made by both parents. And now this boy is dead, after being a prisoner in his own illness and filth for years. It did not have to be that way. I notice one article, the one where mom let reporters in to film the interior, mentions that mom had her computer set up in the parents bedroom so she could play on it while keeping an "eye" on her daughter with severe disabilities across the hall.
How nice for her. Too bad she found herself too busy to set eyes on her also severely disabled son just one flight of stairs and a locked door away.
I agree, I would not keep a rabid animal in those conditions but what prevents my sympathy from kicking in is that these parents CHOOSE to put their son, the husband's namesake, in there for four years rather than help him or allow others to. And teh help was out there and was free in most instances via the school system.
This boy never had a chance. Potty training time came and mobility and they simply locked him away rather than do what was needed for him. MOO, they sacrificed him so mom could assuage her own guilt and care for her daughter. I think there are layers and layers or neglect covered over by guilt in this case.
