What I wish my teachers/ school counselor knew about CF

schoolcounselor

New member
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!
 

beautifulsoul

Super Moderator
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.
 

Oboe

New member
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.
 

nmw0615

New member
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.
 

ethan508

New member
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.
 

leecee

New member
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.
 

schoolcounselor

New member
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!
 

schoolcounselor

New member
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!!
 

schoolcounselor

New member
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!!
 

schoolcounselor

New member
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!!
 

schoolcounselor

New member
leecee- I am so sorry to hear about the letter you received from your daughter's school! How extremely frustrating!!! Another person shared the importance of a "schedule/ plan" for when students are out, to help ensure they receive ALL of the work they need, and ALL of the assistance they need as well. It's one thing for the teachers to "send it all home" with the students, however that doesn't help them "learn" it. That simply shows them what they missed. Math, since each skill generally builds from each lesson, I can imagine was extremely frustrating for you all when you were not provided enough material or assistance in catching up. This is great information in helping me foresee issues that can arise, so that I can be proactive in assisting students and families at my school. I hope this upcoming school year goes better for you and your daughter before she heads off to high school! :)
 

Aboveallislove

Super Moderator
Wanted to throw out a few more ideas. First, I love that you are here schoolcounselor asking for ideas! So, as backdrop, I'm a mom of a 6 year old with CF, but we homeschool, so I don't have the "first hand" experience. What I wanted to share, though, is from the other end. In my pre-mommy life I taught undergraduates and had to address various accommodations. Also, as a lawyer, I've worked on many cases with employers...Given that your students are high schools, in addition to helping them in their high school careers, I see you having the chance to help them figure out how to handle issues in college and then the work force. I'm a big proponent of the Love & Logic series and the one on Parenting Children with Chronic Health Conditions is so helpful. What I'm wondering is if the process of working with the students, you are able to have them take ownership for it? Have them learn (with your guidance) how to approach a teacher and make a request. How to protect their privacy. How to handle/address teachers who aren't supportive, as well as to show appreciation for those who are. By example: I vividly recall one student with a severe visual impairment but that you would never know. At the beginning of the semester after everyone left he introduced himself, explained he had this issue and because I gave handouts at the beginning of every class asked if I could send them to him ahead of time or if he could come to my office ahead of time to pick up and expand the font. He was trying to make my life easy and not make his issue my issue. I easily was able to print off a larger font one but I also think he liked the privacy of it that it wasn't widely-known and he probably didn't want it to be because he actually was a star pitcher on the ncaa-ranked baseball team but soon would be losing his sight almost entirely and thus that roll, which had to be so hard). Most teachers want to do anything they can, but how they are approached can make the difference in how they perceive the request. And also, they have a lot on their plates too. Re the lectures notes: Personally, I would never give my lectures out to a student because they would copy and distribute to the students who wanted to be lazy. On the other hand, I've repeated during office hours entire lectures for students. And I'd happily allow (and have scheduled before) classes to be recorded. With technology today (and likely high school AV/IT classes/clubs), I wonder if an option might be to have classes filmed and streamed so that the students are able to "attend" class at any time on the internet. Have quizzes and exams placed on line (timed and maybe even have volunteers at the hospital proctor them if that's a concern). Finally, I think that all CFers handle the situation differently, so I wonder if asking how they want the information shared, what information, etc. so each can have his or her own privacy needs met. Anyway, fwiw.
 
T

trghpu1994

Guest
The principal at our daughters school looked at me with horror when I explain she had to eat a high fat diet. I was told we would have to have a dr note before she would be allowed to have a snack with fat in it that WE would provide at school. We sent all sorts of paperwork to the school. I am still not sure the principal believes us. Our 504 plan was mostly ignored. Now she also has learning issues due to having been raised in an orphanage and learning English and generally really behind educationally. We now have an IEP for this upcoming year.
 

Aboveallislove

Super Moderator
The principal at our daughters school looked at me with horror when I explain she had to eat a high fat diet. I was told we would have to have a dr note before she would be allowed to have a snack with fat in it that WE would provide at school. We sent all sorts of paperwork to the school. I am still not sure the principal believes us. Our 504 plan was mostly ignored. Now she also has learning issues due to having been raised in an orphanage and learning English and generally really behind educationally. We now have an IEP for this upcoming year.
I wonder if it also might make sense for the IEP to include that in any "health" instruction in school they explain that these are general guidelines and that some have medical conditions that require more high-fat or high-salt foods, so that she doesn't come how refusing to eat because "it isn't healthy!" I seem to recall reading about that somewhere.
 

ethan508

New member
I went to a family reunion this weekend and listened to a discussion between my Aunt who is a school counselor, and my cousin's wife (whose 11 year old daughter has CF). One thing my cousin said is that her daughter was just getting exhausted by school and treatments. My Aunt suggested that her 504 plan include a phrase about "limited stamina" and that homework could be abbreviated in a way as to facilitate this without compromising the education. For example doing ever other problem in math, so that all concepts are covered (i.e. the difficult problems at the end of the assignment). Also mentioned was maybe allowing for a break period for my cousin to rest, in lieu of taking elective courses (i.e. having a nap/rest/treatment period after lunch rather than Art or Music). I hadn't thought of CF in terms of "limited stamina" before but it made a lot of sense to me. I remember napping through quite a few classes in H.S. and college.

My cousin was also worried about PE and wanted her daughter to get exercise, but felt that the PE teacher was not allowing proper breaks and hydration for her daughter especially when they went to the track.
 

Simba15

New member
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!
I don't have time to read through all the posts so I might be repeating something that someone already said. I was a school counselor for 25 years and was un officially fired by a school district for having cystic fibrosis. Was it illegal you betcha. However they made everything so incredibly stressful miserable and down right evil that I chose to just walk away. This was a school that catered to special-education students! My advice is if anyonr Feels any type of pushback from the school they should get an educational attorney or a parent advocate from the state.
If this CF student is a high school student they might need the foreign language requirement waived and the physical education requirement waived if they are sick frequently and or in the hospital. Both of these classes have strict guidelines about seat time in the classroom Other courses can be made up with coursework that can be done at home or with a tutor. If the patient is out for a week they should be given one week to make up the work. I have seen many times in the schools where I worked teachers requiring students to come back from the hospital and make up the work in two days. It's completely unrealistic. I am using speech to text to type this so there might be typos. My advice again get a advocate or an attorney if you get the least bit of pushback
 

MikeInMT

New member
One of the biggest issues I had in my later high school years was being sick a lot and fatigue. I am not sure if you know but usually when we get sick its cause of pneumonia and it puts us in the hospital for 10-14 days. Depending on the severity of the Disease this could occur once every three months to once a month. I remember I was tired all the time my 11th and 12th grade year. I fell asleep in classes several times and got a detention for it a few times. When we get sick we tend to sleep a lot. Gym was another one, but that was mentioned above. And at that age I know I did not like the teachers talking about my CF in class, or giving me sympathy over it, as this causes the other students to think I was being favored or babied. I had a great school counselor though, I am not sure what she really did, but my 11th grade year I think i missed something like 41 days of school and nothing was said about it. I passed, but barely. I know it would be a lot more work for a teacher, but if that teacher knows a student has CF, and the student misses a lot of school, maybe have a seperate plan for the CF student. I really struggled in Biology cause it was mostly lectures. I had my work cut out from me borrowing notes from 2-3 class mates so I would not utterly fail the test.
And as was already mentioned meds. I hated going to the counselors office to get my enzymes. Sure these could be harmful to normal people if they took to many of them, but otherwise are completely safe.
The last thing I think is probably the biggest, Nebs. I never did any nebulizor treatment during school, I relied on inhaler because my school would not allow me to set up and use my nebulizor. When I got a car of my own I would go home during lunch to do one. But now days you can get one and do it in your car, so that option is there for CFers.
 
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