ABOUT ANNA Anna is complex in many ways. She is basically non-verbal, her “language” is a mix of using PECS, a few simple words, an iPad App (Go Talk Now), and hand gestures. She does speak a few simple words, all single words and never a phrase. For a reason we can’t understand, at the moment we are seeing more and more moments where she is trying to communicate to us about her wants and needs, we are trying to understand what she is saying, and all we are doing is getting frustrated with each other because no one “get’s it”. This has resulted in more self injury behaviors in Anna, which is how she typically shows her frustration. Anna will hit herself, sit down and bang her head of the floor, bang her iPad against her head, bite herself or us, pull hair, push furniture over, pull pictures off the wall, ect… We don’t have a solution to this other than to try and redirect her and prevent her from hurting herself more and working to “Anna proof” our home. For the last ...
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Showing posts from August, 2024
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A GENERAL BACKGROUND ON THE FAMILY I probably should start with some general information about our family. Denise and I have 2 children; Anna is 31 and lives with us, her older sister Eva is 35. Eva, her husband and our grandson live about 15 minutes from us and we see them very regularly. Eva is in the medical field and her husband is in law enforcement. We live in the western suburbs of Cleveland, Ohio, where we both were born and raised. My career had two parts; the first half of my career I worked as an Engineer for GE in Aeronautics Research and Development in the defense field (stealth technology). My second career was business, after 18 years at GE I left corporate life and took over the family construction business. I say I retired in 2015 at the age of 57 but really I kept working but just stopped getting a good, steady paycheck; my third work career has been caring for Anna full time. Denise was a pediatric nurse and worked in a NeoNatal Intensive Care Uni...
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I've decided the first note should be on who we are and why I decided to do this. My name is Paul, my wife's name is Denise and our daughter is Annelise (Anna). We also have another daughter Eva, her husband Justin, and a grandson CJ. Anna has what is considered an ultra rare genetic condition that has resulted in her, among other things, being significantly developmentally delayed. The condition is not important but if you interested in learning about this ultra rare condition please check out the Champ1 Foundation (champ1foundation.org). A detailed summary of Anna's life story can be found on their website. Anna does, and will require support and care for the rest of her life, as well as continued medical care and evaluation(s). For Denise and I, going on 15 years now the primary caregiver role has been myself; Anna just listens and reacts to me better, she always has for some reason. In about 2 weeks now I will be having a total knee replacement and will be unable to car...