What I wish my teachers/ school counselor knew about CF

[schoolcounselor]

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]

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.

[trghpu1994]

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]

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]

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]

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]

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.