Just wondering for the future - For those kids in school with CF, how do you deal with missing so much school when you are in the hospital? How does your school handle it? Are you homeschooled? Just trying to weigh out our options - we might have to move to save $$, and am wondering if we should homeschool or find a really good school district that might be more tolerant to the absences.(if that exists) Thoughts?
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missing school
- Thread starter anonymous
- Start date
rotandroll
New member
Hi. I missed about 12 weeks of school each year from the sixth grade until I finished high school. If your child attends public school, they must offer a home school teacher if you request it. Talk to the staff at your child's school even before school starts and let them know about all of the health problems related to CF. I always used what was called a "504" in my school district, which meant that I could not be failed out of school because of sick abscences. Also, I think it is important to let your child's teachers know about coughing fits, sometimes frequent bathroom trips, etc. It is not legal for your school district to fail your child because of abscences due to illness! I had a very hard time because while I was very sick I never looked very sick. Just find the right people in the school, the dean of students, the principal, and each teacher that will have contact with your child, and work a system out before classes start. Hope this helps.
rotandroll
New member
Also, the social worker from my CF clinic was always available for begining-of-the-year meetings with staff and teachers. This was very helpful because they were able to educate the staff, and it was sort of more reputable than just myself and my mother saying I was sick.
S
SeasonsOfLove
Guest
Do any of you have specific provisions in your 504 Plan or IEP for what the school should do during hospitalizations?
Thanks, Kathy
Thanks, Kathy
From the time Emily entered 7th grade through graduation from high school, she had a 504 in place, which protected her against failing due to absences due to illness and/or hospitalizations. Check into it. Every school system has to offer it if requested and it can be supported by your child's doctor. It's a wonderful program for CF kids because it can be written specifically for each individual child. It's not a "blanket program".
Purplelungs
New member
Yes i had a "504" plan as well. Some school districts might try to say its only for someone with huge learning disablities but its not. Special provisions in it for me was extra days to make up home work if I was missing because I was sick...if it was a feild trip same treatment as other students. I was also considered homebound on it which is where all teachers get your homework together for the day you missed and if you know how long you will be gone...and then someone from the school will come to your house and bring your homework, they should even help you with it if you feel like working on homework. I think one of my homebound teachers said they were required to stay at least an hour to help but would always say they did if i didnt feel up to the work (they were nice-i dont care if they got paid for it they deserve it). Also a special provision for bathroom breaks, if i had to go they had to let me go, even if i was late to class because i was in the bathroom (of course not alot late but maybe a minute or two). I was allowed to have snacks in the classroom as well.
Just like rotandroll said do this BEFORE school starts so they can get a start on the plan and it will be in place for that school year. Be sure your child is on it each year to...some schools may require you to re-enroll in the program each year. Also they have parent teacher meeting as request by the 504 program. It usually isnt a big deal, just making sure I am doing ok if I need any more special provisions, letting my teacher(s) tell my mom how they think I am doing in class or if i need more special help, my mom telling teachers if i need more help or less work when I am absent (yes you can do that if a teacher gives alot of busy work and your absent they maybe required to lessen the load and only give you the important things like tests so you can keep up.)
Even if your child is doing fine now its still a good idea to start up a 504 since you never know how many days they will miss, its unpredictable.
Just like rotandroll said do this BEFORE school starts so they can get a start on the plan and it will be in place for that school year. Be sure your child is on it each year to...some schools may require you to re-enroll in the program each year. Also they have parent teacher meeting as request by the 504 program. It usually isnt a big deal, just making sure I am doing ok if I need any more special provisions, letting my teacher(s) tell my mom how they think I am doing in class or if i need more special help, my mom telling teachers if i need more help or less work when I am absent (yes you can do that if a teacher gives alot of busy work and your absent they maybe required to lessen the load and only give you the important things like tests so you can keep up.)
Even if your child is doing fine now its still a good idea to start up a 504 since you never know how many days they will miss, its unpredictable.
I
IG
Guest
My school was really cool about me missing school.
The year before tx I was a sophomore in HS and I was in the hospital an average of 2 weeks per month... During the other time I was in school. I was one of those determined people [aka stupid people] that would go to school because I felt I had too even if I was running a 103 temp [even though it was normal for me back then]. The principal was a great guy who was willing to talk to the teachers about my situation and they were willing to accomodate me without any plan. I was able to make up work when I got back from the hosoital or my grandmother would pick up the work from school. They were very willing to work with us, but we had told them about the CF before any of my complications really started to kick in. During the year that I couldn't attend school, I was too sick too often, they sent a teacher out to give me my work, and help me through whatever subjects I needed help in.
They were really accomodating but we were open and talked to them about it. Hopefully you won't have a problem.
Needless to say I never failed a single subject while I was sick. [I even managed to do band for four whole years... despite my abscences]
I did happen to fail one class my freshman year but that was because of boredom and sleepiness... 90% of that class failed anyway.
The year before tx I was a sophomore in HS and I was in the hospital an average of 2 weeks per month... During the other time I was in school. I was one of those determined people [aka stupid people] that would go to school because I felt I had too even if I was running a 103 temp [even though it was normal for me back then]. The principal was a great guy who was willing to talk to the teachers about my situation and they were willing to accomodate me without any plan. I was able to make up work when I got back from the hosoital or my grandmother would pick up the work from school. They were very willing to work with us, but we had told them about the CF before any of my complications really started to kick in. During the year that I couldn't attend school, I was too sick too often, they sent a teacher out to give me my work, and help me through whatever subjects I needed help in.
They were really accomodating but we were open and talked to them about it. Hopefully you won't have a problem.
Needless to say I never failed a single subject while I was sick. [I even managed to do band for four whole years... despite my abscences]
I did happen to fail one class my freshman year but that was because of boredom and sleepiness... 90% of that class failed anyway.
Justsmurfin
New member
I was homeschooled from 8th grade until graduation. It worked best for my family and I loved it. I was miserable in school anyway and aced all my work even though I was hardly ever at school! For me even looking back I wouldn't have changed the choice we made, for us it was an awesome one. I think I was healthier than I would have been in school and since all I wanted to do when I got home from school was sleep because I was so worn out I really think I got to do more other activities than I would have if I would have been in school.
HOwever thats a choice each family has to make and what worked for my family might not work for yours.
Before homeschooling I was on a program called intermittant homebound. Basically when I was absent for any reason that had to do with my chronic health problems they would send a teacher to my house to go over the days work with me. I went to school when I could and when I couldn't I stayed home. Also had it where I could go in late as I had big coughing issues in the morning and all
HOwever thats a choice each family has to make and what worked for my family might not work for yours.
Before homeschooling I was on a program called intermittant homebound. Basically when I was absent for any reason that had to do with my chronic health problems they would send a teacher to my house to go over the days work with me. I went to school when I could and when I couldn't I stayed home. Also had it where I could go in late as I had big coughing issues in the morning and all
pattisunshine
New member
Hmm. I don't know whay I keep getting listed as anonymous, since I logged in. This is Pattisunshine, I am the originator of the question, Anywhoooo. The meeting sounds like an EXCELLENT idea. I don't know why our CF clinic didn't mention it before!
pattisunshine
New member
Thanks for all of the ideas! I have some years yet before Hayden is in school, but I like to plan ahead. I will definitely look into the 504 and the possibility of a co-op homeschool. I guess it will also depend on what Hayden feels like doing, since one of you mentioned that you are more comfortable being homeschooled....who knows? Thanks for the thoughts!