I know that our correspondence is all "business." But I wanted to take a few minutes to say a few things. i dug out the original denial letter from Social Security. I got mad when I reread the part where it says Emma doesn't qualify because she isn't in "pain." That doesn't even make any sense! Since when does a person have to be in pain to have a disability?? And they don't know Emma. They don't know that some noises hurt her and she shuts down. They don't know that she is almost 11 and still can't remember to close her eyes when I am rinsing the shampoo out of her eyes. Or that she doesn't process that the handle in the shower is hot one way and cold the other. I have to regulate the water temperature for her. They don't know that when her little brother was using the potty, Emma couldn't begin to think of what she needed to do when SHE too needed to use the bathroom. So she stood naked in the living room and screamed and peed all over the floor. They don't know that she doubles over in pain because she hasn't had a bowel movement in 4 days, despite taking Miralax and 2 stool softeners ( I give her 2 now) every day. And that it costs me gas money that I don't have, in an old car, driving an hour to a specialist to see what kind of help she needs-- what else can I do to help her go to the bathroom. They don't know that some mornings her "switch" just doesn't turn on right away and I have to dress her and help her hold her spoon until her brain " turns on." They don't know that my girl is sweet as can be, but rarely hugs or kisses me, but she has kissed me on the lips two days in a row and I have cried because I'm completely over the moon. They don't know.
Thanks for reading. :-)
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