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“My job is 97% boredom and 3% shear terror.” ~J.F.-my friend the cop

Posted Aug 05 2010 7:10pm

I am leading up to more posts on David and sending your kid to live in a residential program vs. keeping your kid at home. Trust me.

So, what scares the carp out of you? Or what is the thing you dread most? With respect to your kid, of course.

One thing I have noticed is that many of us with severely disabled kids are really single parents with disabled kids. By that I mean that in many instances, it is one parent who does the overwhelming amount of work (?). This seems to be more prevalent in families with normal kids as well, or if, like me, you win the lottery twice. Do you spend your time worrying how your marriage has been / is being destroyed, hating everyone for it, and doing nothing about it since there seems to be nothing to do?

How are the nights? Do you sleep with your kid, and if so, why? Is it because s/he may not make it through the night without needing you? Is if for his/her safety or your sanity? No matter what, what scares you so much that you give up your marital bed (so to speak) for your child? Or, like me, do you have a monitor that you just never stop listening to? When was the last time you slept?

HELP! Ooops, sorry, I mean help. What about help? Do you have help? I have help, we call them “nannies” as you know. Technically, they work for Pearlsky, Inc. (really) and she pays them. The money ultimately comes from the state. So in this situation, I can basically hire anyone I like (other than Pearlsky’s parent or child). We have had women who, very honestly, are just incredible people sent from heaven, to the unfortunately hired whore-miscreant last summer. But it is Pearlsky (ok, me) who hires, trains, supervises, and fires. Others are relegated to hiring nurses from agencies. One may appropriately ask what nurse would do such work? Often one quickly learns they are nurses who, well, can’t get other work. You have minimal say in which one gets the job, you have minimal involvement, if any, in supervision, the entire thing can be very difficult. Nurses are also mandated reporters who often do not have a clue what it is like to be the parent of one of our kids. And, you cannot change a dose or frequency of medicine without doctor’s orders and paperwork. And, to top it off, you have to come home everyday to this person, and they stick around for all their hours, you can’t send them home early and say you’ll lie on their time sheet for them so they are paid for the entire time, that is fraud, insurance fraud probably.

School. Do you send your kid to school? Is it the level of integration you want for your kid? How is your kid treated by the teacher, aides, or even the (evil) school nurses? Who changes your kid? Is s/he left sitting in a corner all day? What say do you have in it? What choice? Is the only thing written on the note that comes home everyday how many times s/he pooped? You can’t ask “how was your day?” Do you spend your day wondering what they are doing to your kid?

I am not looking for answers, at least not yet. These are rhetorical questions. But I would like you to comment on what “area” scares you the most, consumes you the most, is destroying you the most.

Is it what is happening to your marriage / family? The night terrors that are all yours? The help that is an incedible double edged sword? School and all the accompanying carp?

See, I am leading up to more on David … residential vs. home, etc. A personal perspective, promise.

So, what is the one thing killing you?


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