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15 July 2003

Down's Syndrome Update
Elizabeth is in danger of losing her job. She, unfortunately, is the occupant of a grey area no one has experience with as it's rare. The problem is this: she's savvy enough to tell lies to everyone in order to get a day off work, which means that she must know what everyone wants to hear. And she probably has some real need for a day off -- and she has lots of vacation time due -- BUT she's not savvy enough to go in to her supervisor and say ahead of time she needs a day off. No -- she said nothing to them, but wrote on her check-in board on Friday, "See you Tuesday." She told me on Friday night that her supervisor gave her Monday off (I was going to pick her up at 3:30 Monday to take her to the doctor's). I was not convinced, but it was too late to check. Her supervisor is very upset and angry. The job coach and I agree that at work they say things that are not blunt enough and are construed in the best possible light by Elizabeth -- i.e.: Supervisor: "If you were anyone else I would've fired you." E thinks: I am protected even when I do wrong. They aren't running a sheltered workshop, however, and even if they are not very understanding I can hardly blame them. I'd like to, though.

Elizabeth probably averages out as a 6-year-old. In any DD person "deviousness" to attain ends may be simply the only way available -- a normal person doesn't have to lie because she knows how things work. The day off would've been fine -- and easily attained by any normal person. E isn't normal, so she used abnormal ways to get a day off. Surprise, surprise. And obviously her machinations can get her a day off but her foresight stops there. She can't understand that when she goes in on Tuesday the work people will come down on her like a ton of effing bricks. And no Social Security, either.

Elizabeth doesn't quite understand abstract quantities. So if you have 6 apples in front of you that's fine, but if she has "vacation days" that's fuzzy and unknown. She will listen to what you say, then apply that lesson across the board, too -- Deb and I explained to her that she has a certain number of vacation days, and that if she wants to go to camp, say, she can't use up all vacation days on something else. This might've been a mis-application of that principle. She might've thought the missing Monday had to not come out of vacation time. I guess a normal person would've used a sick day or a personal day or something. I've never actually had sick leave so I don't know -- anyway, I'm always sick :-) I did ask months ago for an accounting of Elizabeth's leave time available -- with no results at all. Someone has to know. If we don't, how can we expect her to? If I knew I could make her a "bank book" sort of thing, with hours available, used, etc. But I asked and never found out -- I suppose I should've made more of a fuss about it.

I do believe she’s trying to understand how things work, but she isn’t able to. All this secretiveness may just indicate how hard it is when you’re trying to “pass,” but are limited in your understanding. This has got to be very difficult and lonely for her.

I don’t know how she has been instructed in the past, but I think she needs monthly meetings wherein things are laid out plainly -- you need to do blah blah, you have blah vacation days, you have to do this for a sick day, or this for a vacation day, you are expected to do this and this or the result will be this. I think because she doesn’t understand how things work she just assumes it doesn’t matter -- any old way is ok.

You know, if a child smeared on mummy’s lipstick, no one would then expect her to pay the mortgage. Elizabeth is not terribly different from a child pretending to be grown: she thinks she’s indistinguishable from other workers. She thinks she’s doing fine, but she isn’t able to understand -- therefore her “fine” is a disaster.

posted by - 3:36 PM


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