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Thread: What I wish my teachers/ school counselor knew about CF

  1. #1

    What I wish my teachers/ school counselor knew about CF

    Hello to everyone! I am a school counselor in NC and am learning about CF in a course I am taking. As I have read through many of your posts, it seems that there are many things that your school system is lacking to implement, that would benefit you in your school setting. I know that there are IEP's, 504 plans, and health plans that can be beneficial in assisting you while at school, but I'm curious as to what we can do to help make the transition at school easier for you. Basically, what are some things that would could do from a school perspective, to better serve you? I'm interested in learning how to assist future students I work with that are diagnosed with CF and would love some feedback!

  2. #2
    I haven't been in school for a while but when I was I got pamphlets for teachers from the CF clinic that summed up what CF was. Like important info about Picc lines and ports, needing to go to the nurses offices for enzymes, possible frequent bathroom breaks, how you should NOT not let a CF student go to the bathroom. Depending on the school, some will not allow CF students carry around enzymes which are harmless. Going to the nurses office everyday raises questions from other kids and embarrassment. By the time I got to high school I didn't care if I got in trouble carrying around enzymes. I did anyways. My school was very accepting and accommodating with the 504 and IEP's. I personally didn't have a problem with that but I know other parents do. I remember I had two sets of school books. One for home and one for the classroom so I didn't have to haul around a bunch of heavy books for the days I was feeling fatigued. I was unable to participate in mandatory gym class half of the time because of my port or Picc line. Eventually I was able to get out of it but had to substitute another class instead of gym. Gym class is important for exercise especially for us but half the actives are with balls flying everywhere which is unsafe for ports and Piccs.

    That's all I can think of at the moment. I'll come back if I think of anything else.

    Oboe's post reminded me of something-
    I was FAR FAR behind after missing so much school before and after my transplants. the only way to catch up was summer school AND school AFTER school. However, you need teachers willing to teach during those times. A few of them at my school were extremely generous with their time and literally volunteered to teach me! If no one is willing to do that then CF students will run into problems and possibly Fail.
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  3. #3
    Senior Member
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    Sep 2013
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    101
    My only problem in high school was failing four classes in my 10th grade year because I was in the hospital for four weeks (two two-week visits) and no one would help me with the material I missed. Almost happened again in 11th grade but they just said "forget it," and forgave the grades rather than actually having me do anything. Went to a better school my senior year.

  4. #4
    Senior Member
    Join Date
    Jun 2011
    Posts
    334

    What I wish my teachers/ school counselor knew about CF

    I agree with Oboe. My biggest issue was always the amount of school I missed. My specialized plan gave me four days to completed missed work for every day I was absent, so it wasn't really a time issue. It was that I missed many classes and the accompanying lectures and lessons. We finally got it worked out that when my best friend would pick up the assignments I was missing, my teachers would also have labeled lesson or lecture notes so I could learn what I had missed. This helped a lot, since I took entirely Honors or Advanced Placement courses in high school.

    As for things like going to the nurse's office for enzymes, I never really cared about it. The only reason I got permission to start carrying my own in high school was because my friends and I would eat off campus and visiting the nurse put us in a time crunch. I was allowed to keep a small snack, like a protein bar, at my desk as well as a bottle of water.

    My biggest issue is what I stated above, about missing classes. In elementary and middle school, this wasn't as big an issue, but it really stressed me out in high school. Getting lesson or lecture notes from all my teachers helped a ton.

  5. #5
    Senior Member
    Join Date
    Jan 2015
    Posts
    278
    I had good health through H.S. so I'm not sure if many of my teachers even knew I had CF. I was an Aid for our Library one semester and the Librarian knew I had CF. She didn't understand the disease at all (not that I offered her much information) and treated me with kid's gloves. She would worry about dust on books, me lifting too much weight (like more than 2 books) and sometimes want to talk about CF with other people in the library (I did not want to share my personal health with random member of faculty and the student body). I've had a few other peers and authority figures treat me a little like a porcelain figurine, and I disliked that kind of 'special' treatment in a big way. It made me feel like CF was my DEFINING trait, and not just a smaller slice of the overall person I was.

    I did sometimes forget to take my enzymes during the lunch period and sometimes I wish I could have just given my 5th hour teacher a knowing glance, quietly excused myself to the drinking fountain, and return to class without disruption (maybe sitting near the door would help that).

    I guess what I'm saying is treat your students with CF with an adult like respect. Many CF-ers are far more mature and experienced in dealing with their issues than you might first give them credit for. That being said, teach/help them develop methods for dealing with the disease in such a way that you'd expect in a professional setting (especially at the H.S. level). If they miss work, allow make-up, if they need a bathroom break let them take it. Whatever they need to take care of, teach them to do it in a way that is not distracting to the class and minimizes the disruption to their own learning (it is a skill set they will need in their professions). Make sure that any teachers you share information with are able to treat that information in an adult and respectful manner. Unfortunately, I had teachers I wouldn't of trusted to be discrete or mature about my condition.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  6. #6
    I am a parent of a teen with CF. This year (8th grade) was the first year I made a 504 plan at her school. The only problem I had was that after a hospitalization during the school year that took her out for 2 weeks, she was behind in math and never recovered a good grade in that class. The teacher did not give her much work to do when she returned to school so she could catch up. I blame part of that on him being a new teacher. What peeved me the most was when I got a letter from the school telling me that she had been absent from school for a total of 18 days and if she wants to succeed in school she needs to attend regularly. Really? How did I forget that? I just found that to be annoying. My advice would be that teachers be proactive in assisting students catch up on their school work.

  7. #7
    Amber- This was very insightful information! I am glad you mentioned the part concerning PE! This is something I will have to make sure I add to my list of topics to be brought up in IEP, 504, of Health Plan meetings, to ensure that this is being addressed in my students' plans as well. It was so disheartening to read about your experience and Oboes in regards to how you're making up school work. You already have SO much to deal with, the school needs to ensure that you're receiving assistance in making the transition back into school and easier one!! Thank you so much for your response!

  8. #8
    Oboe- I am so sorry to hear about your experience regarding your absences and your schools response. I think that as a school, we need to make sure we take into account all the many challenges you are faced with outside of school, as well as inside school, to ensure that we are assisting you to the best of our ability. With your circumstances, it should be required that there is something in place to assist with absences. Hopefully with educational plans in place, I can ensure my students do not have the same experience as you did. Thank you for sharing this information!!

  9. #9
    mmw0615- I can only imagine taking Honors and AP courses, while having to miss long stretches of days at a time! I think it is awesome that you were able to have teachers that had the lectures, notes, and information available to you so that you could "teach" yourself. That still buts SO much extra on you, on top of your already full plate. I think it's admirable that you were able to excel and do so much on your own. I liked the time schedule for assignments you shared. I will add that to my list of things to ensure are on students plans, so that there is never any question on when something is due. Great information you shared. Thank you!!

  10. #10
    ethan508- You brought up excellent points for me to keep in mind when I am assisting students with CF and their family members. I like how you even mentioned that you wish you could have somehow given your 5th block teacher a knowing look, so that you could simply excuse yourself to go get water to take your enzymes. I think that a system put in place, such as sitting near the door, maybe having a certain color hall pass the student could display on their desk, showing the teacher "hey- I need to go take care of something", but in a discreet way, without having to raise their had and have a conversation about it. This would hopefully illuminate drawing unnecessary/ unwanted attention to them, however allowing them a way to ensure they are taking care of themselves. Thank you so much for the information!!

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