I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Friday, April 15, 2016
Ways to fit standing time in
I let Andy stand at the sink in front of me while I do the dishes and load the dishwasher. He enjoys playing in the water. I also have him stand at the sink for toothbrush time and hand washing after school.
Tuesday, April 5, 2016
Friday, April 1, 2016
Things are better
Had an emotional couple of days with my daughter. Andy has been great, but tension has been mounting between me and my daughter. She had a very stressful week of testing at school and took it all out on me.
I decided I'm going to not try and be her friend, but just be a good and loving mom. I do still feel I have the right to tell her when she is hurting my feelings and want to remain open with her. It's better when things are good between us, because then she's nicer to Andy, and interacts with him more.
I've also been trying to be mindful of how I pay attention to Andy and try not to be overly affectionate with him in front of her, because she gets jealous. Even when I was just saying I needed to give him medicine because he was sick, she got really bent out of shape. She thought I was treating him like my "precious sick baby" and it was making her angry. I don't want to walk on eggshells all the time, but she expects equal attention and is watching and waiting. I told her several times today how I was proud of her for several different things and she seemed to enjoy that.
My husband had a long talk with her the night I broke down, and it seems that it helped. She's trying to behave more so than usual. I think that I needed to ask him to step in, which I did, because nothing I was saying to her was getting through.
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