Portrayed Life Expectancy Affecting Life Decisions

pipersmom

New member
Piper started out with a health plan and now has a 504. To handle the homebound aspect, her plans have always had "automatic homebound instruction after ten cumulative (NOT consecutive) days absent". It hasn't been much of an issue for us the past two years though, last year (4th grade) she was on IVs within 3 weeks of school starting and her CF Doc decided to put her on homebound for the rest of the year. (She had a pattern of not being able to be in school more than 3-4 weeks at a time before needing IVs, and the hope was keeping her out of the environment would help.) We actually do her homebound at the school, after school hours- the classroom gets wiped down, and I think it helps both of from going completely crazy since it's just the two of us to begin with and 24/7 of togetherness can get old.
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<br />This year she is starting out on homebound and will not be in the classroom at all. She seems to be in a pattern of needing IVs roughly every six weeks, and our clinic does not allow kids to attend elementary while their port is accessed. The interesting thing to me has been that she is learning and excelling with 5 hrs of instruction a week, and maybe another hrs worth of homework. We love that we can tailor her learning to her needs- last year she did 5th grade science as a 4th grader, and this year will do 6th grade science and either history or english. The school proposed a grade skip to 6th, but she has no interest in doing that, and it isn't something I'm willing to push her into. (She also has Asperger's Syndrome).
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<br />To cover the social aspects, Piper is allowed to attend school field trips, field days, etc as medically feasible, and also has a lunch group at school once a week, where she invites 5-6 of her friends, and they all have lunch together. She also participates in the talent show, and the school chorus. Last year she also had recorder lessons from the music teacher after school once a week. We've been very lucky, I think, my understanding is that some school systems want a child to literally not be able to leave the house to grant homebound, Piper's school has always had the attitude that they want her to have as much normalcy as possible. It's very much a love-hate relationship though, they refuse to give her an IEP, and I had to fight tooth and nail for the 504, accomodations for Asperger's and gifted identification.
 
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