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.
Monday, August 17, 2015
Getting respite care finally
We finally have a respite worker coming to our house. Respite care means that someone comes to watch your child to give you a break. Sometimes I stay here for a bit to get things done, and then I go out to run errands with my daughter. The worker is not allowed to watch any other children. We tried getting a worker to help us about a year ago, but there wasn't anyone available near our township. She is employed through a county program for special needs kids and comes here three times a week for four hours. The most she can stay per day is four hours, which is plenty of time for me to get things done, or have time with my daughter. We are grateful things have worked out for her to be here and help us.
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