Tuesday, March 31, 2015

letter to our attorney, in regards to the denial letter we received from SSI for Emma

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. :-)

Monday, March 16, 2015

i don't owe an explanation, but, here, let me give you one

I am incredibly hard on myself. And I thank my mother for instilling guilt in me, so that when I am not well or I say no to someone I feel really really really bad. Not good enough.
Examples: 1. when I didn't feel well and I knew I needed to sleep, I turned down a substitute job one day. I hated myself that day. 2. I feel guilt and am convinced that others look down on me for not working a full-time job outside of home. Even though this is where I need to be. My kids, Emma in particular, need me. I worked outside of the home for over two years after the divorce. It was hell on all of us. Emma had frequent meltdowns. Noah lashed out. I had panic attacks. I don't have family and friends that are able to help with child care. ...
... this brings me to this question: why do I feel the need to explain myself? I don't owe anyone an explanation. Why do I do this to myself? I beat myself up. My depression deepens. Sunshine and running are the only things that help.
I work hard here at home. With my child care. With keeping my house looking nice. I work hard at the schools when I substitute. I am here when I am needed. To take my children to the doctors ( like today.) To be here so I can go down to the school if Emma needs me. To be here to Emma's morning routine and to deal with her afternoon lows. ... but there I go explaining myself again.
I feel inadequate when I don't make enough money to pay for the things my kids need. I usually do well, we get by...sometimes there is money left over. Sometimes there is not enough to stretch. And I feel like an incredible loser for not taking a full-time job. I remind myself WHY I did not. Why I am here. And that my kids are so happy with me here. I know what works for us. And I keep trying to make it work.#singlemom #autism