Sleep deprivation causes the brain to work at a less than optimal level. Anyone with a newborn or someone in the house who has been sick and needed care or anyone who just has a sleep deficit should be able to understand how difficult it is to remember your own name in that state, let alone try to do hold down a job. Yeah, I know - most everyone *has* functioned for periods of time in that state. But imagine years and years of living like that, with no hope of things ever easing up. Try not sleeping for a mere 48 hrs and then share how efficient you might be at any task.

Families with members who have a disability, especially a child, live an existence that *outsiders* can only imagine, and those imaginings won't come close to reality.
Besides the day to day care issues of someone who is disabled, there's all the case management that parents have to do, absolutely neccessary (whether your kid is disabled or not), and unbelievably mammoth in scope.

With healthy kids we keep up with their MD appts, school stuff, recreational and social stuff, nutrition, etc. It's much more complicated and time consuming to do those same things when your child is disabled. And doing it in a constant state of duress and exhaustion? Good luck on that score.

I've worked with many families who don't have the social resources (no family or friends in the area, new to the area, etc.) to fall back on for respite. Also families who have been bankrupted by a kid's special needs who came to the county for whatever scrap of assistance (and they usually asked for very minor help - things like 1 day of respite very couple of months,an ed advocate for IEPs and reviews, financial help to pay a utility bill because the untilities $ went to pay the co-pays for a kid's meds, etc.

What would any of us do if we ran out of resources and had hungry kids or kids who needed medical help or anything else essential? What would we do first: rob, cheat, & commit other crimes or turn to state and/or fed aid?

In the *olden* days churchs, community chests, & communities helped those who needed assistance.

Today our state and federal gov'ts have taken on that role.

Yes, there are still churches and other organizations to carry on the tradition, but the majority of assistance comes from the gov't.

And, IMNSHO, it stinks.

This is a subject that requires someone else's moccasins on our feet to be able to truly understand.