Getting ready to set up a meeting with my daughter's middle school homeroom teacher. Any advice about what to go over? This year she will be switching classes more often. Last year she had the same teacher for her classes except for stuff like art, gym. music. How do you keep consistency? Should I place much more responsibility on my daughter when it comes to going to the nurse; etc? THat's what I am leaning towards. She has a 504 plan in place, takes her own enzymes, carries her inhaler. This year I may leave a flutter valve at the nurse's office, as my daughter gets more mucus plugs lately. Anything else?
Middle school advice
- Thread starter Rebjane
- Start date
Middle School
It appears as though you really have a good framework in place. My daughter will only be entering first grade so all the major work was done last year. She too has a 504, knows when she has to go to the nurse before lunch for her enzymes, knows when she must use the restroom (quickly). Her kindergarten teacher had told me that she never took advantage to the "freedom" that was afforded her so I am hopeful that when she reaches middle school age that she is as responsible as it appears your daughter is. I have had to go to school during the day to perform her airway clearance with her and very rarely did the nurse need to call down to the classroom to remind the teacher. Both my daughter and the teacher had developed quite a routine that worked well and there were 24 other children in the class. I think your plan of meeting with the homeroom teacher is a great idea. I know that I have years before I'm faced with this but I know this past winter I was almost in daily contact with the teacher by either a note in her back pack or via e-mail. This open line of communication allowed for the nurse and the teacher to make me aware of some personality changes that she was exhibiting while in school that we later determined was a side effect of a corticosteroid that she had been placed on a month earlier. So far my daughter does not mind when I inform people of her condition but who knows that could change. I really don't know how many of the other staff members who come into contact with my daughter are aware, but maybe it wouldn't hurt for all of her teachers to know that she has CF, not for any special treatment but so that they may be an additional set of eyes for you. I truly appreciated when the teacher and nurse let me know about her behavior. I may have come to a different conclusion and not reacted in such a way that benefited her. Good luck to you both, I'm sure it will be great!
It appears as though you really have a good framework in place. My daughter will only be entering first grade so all the major work was done last year. She too has a 504, knows when she has to go to the nurse before lunch for her enzymes, knows when she must use the restroom (quickly). Her kindergarten teacher had told me that she never took advantage to the "freedom" that was afforded her so I am hopeful that when she reaches middle school age that she is as responsible as it appears your daughter is. I have had to go to school during the day to perform her airway clearance with her and very rarely did the nurse need to call down to the classroom to remind the teacher. Both my daughter and the teacher had developed quite a routine that worked well and there were 24 other children in the class. I think your plan of meeting with the homeroom teacher is a great idea. I know that I have years before I'm faced with this but I know this past winter I was almost in daily contact with the teacher by either a note in her back pack or via e-mail. This open line of communication allowed for the nurse and the teacher to make me aware of some personality changes that she was exhibiting while in school that we later determined was a side effect of a corticosteroid that she had been placed on a month earlier. So far my daughter does not mind when I inform people of her condition but who knows that could change. I really don't know how many of the other staff members who come into contact with my daughter are aware, but maybe it wouldn't hurt for all of her teachers to know that she has CF, not for any special treatment but so that they may be an additional set of eyes for you. I truly appreciated when the teacher and nurse let me know about her behavior. I may have come to a different conclusion and not reacted in such a way that benefited her. Good luck to you both, I'm sure it will be great!
TreasureGoddess
Member
Things we added to the 504 plan that have helped (because we learned the hard way).....
Ask for a second set of textbooks to keep at home from all teachers. Your kiddo shouldn't be tired out bringing books back and forth. Plus for any days missed she can have the resources she needs at home to work on.
Ask for a second set of textbooks to keep at home from all teachers. Your kiddo shouldn't be tired out bringing books back and forth. Plus for any days missed she can have the resources she needs at home to work on.
TreasureGoddess
Member
Ok, My post went up before I was done....
#1. Ask for a second set of textbooks to have at home. Many teachers in middle school don't give texts to kids, they keep them in class. This will allow you to be able to work from home should your kiddo get sick and miss class. Also less tiring than carrying heavy backpacks back and forth.
#2. Ask to be able to modify or delete assignments should your kiddo be having a hard time and not be able to keep up.
#3. Make sure ALL staff knows that your kiddo is able to leave the classroom, gym, lunchroom, etc to visit restroom or nurse with no wait. (not waiting till passing period, etc)
#4. Make sure lunchroom knows that your kid AND THE TABLE THEY SIT AT should be first in line every day. Often my son's table wouldn't eat till later and kids with CF need every minute they get to get enough nutrition and calories. For a while they were singling my son out and having him go to the line first, but his table was later in the line, this made him feel awkward and different. Now the lunchroom randomly picks tables to go, but my son's table is always first. Little issue but it meant a lot to him socially.
#5. Occasionally your kid may need more time to eat than the time provided. Ask if it's possible to remain in the lunchroom or to take their tray to the nurse's office to finish. (this rarely happened, but when my son didn't feel well, it was harder for him to get his food down and he's a slow eater anyway, I've heard this from other parents of kids with CF).
#6. Ask for teachers not to ask "are you ok" or "do you need to go to the nurse" etc. unless they are truly concerned about your child. Teachers that haven't had someone with CF in their class may not be used to the scary sound of heavy coughing. Once they spend some time with your child, they will most likely get a good sense of when that child is in distress and should be encouraged to go rest in the nurse's office, etc. If that's the case, ok. But if not, it was making my son feel embarrased.
#7. Please meet with each of the teachers (or send an email) and let them know you truly appreciate the extra time and care they're showing to your child, but to please always remember that these kids want to be treated as every other kid, they are kids that happen to have this extra burden, but they're not CF Kids.
#8. One other issue that arises is often kids with CF don't look like they're sick most of the time. My son bounces about and then later crashes, then is back to bouncing about often within a few hours. It's hard for someone not used to CF and its effects to realize just how much that kid is doing, the number of pills, air clearance therapies, needing more rest, etc. It's often called an "Invisible Disease" because of this. Explaining this plus showing the list of meds/treatments my son does daily really helped the teachers understand. This sometimes becomes an issue when needing to modify homework etc so if they know your kid is working harder and sleeping less than the healthier kids, it just helps overall for them to have some kind of an idea.
#9. Ask if the homeroom teacher will be a primary contact. This allows you to send one email when your kid is having issues and it also helps teachers not be bombarded with multiple emails.
#10 have fun! We've found middle school to be a good experience.
#1. Ask for a second set of textbooks to have at home. Many teachers in middle school don't give texts to kids, they keep them in class. This will allow you to be able to work from home should your kiddo get sick and miss class. Also less tiring than carrying heavy backpacks back and forth.
#2. Ask to be able to modify or delete assignments should your kiddo be having a hard time and not be able to keep up.
#3. Make sure ALL staff knows that your kiddo is able to leave the classroom, gym, lunchroom, etc to visit restroom or nurse with no wait. (not waiting till passing period, etc)
#4. Make sure lunchroom knows that your kid AND THE TABLE THEY SIT AT should be first in line every day. Often my son's table wouldn't eat till later and kids with CF need every minute they get to get enough nutrition and calories. For a while they were singling my son out and having him go to the line first, but his table was later in the line, this made him feel awkward and different. Now the lunchroom randomly picks tables to go, but my son's table is always first. Little issue but it meant a lot to him socially.
#5. Occasionally your kid may need more time to eat than the time provided. Ask if it's possible to remain in the lunchroom or to take their tray to the nurse's office to finish. (this rarely happened, but when my son didn't feel well, it was harder for him to get his food down and he's a slow eater anyway, I've heard this from other parents of kids with CF).
#6. Ask for teachers not to ask "are you ok" or "do you need to go to the nurse" etc. unless they are truly concerned about your child. Teachers that haven't had someone with CF in their class may not be used to the scary sound of heavy coughing. Once they spend some time with your child, they will most likely get a good sense of when that child is in distress and should be encouraged to go rest in the nurse's office, etc. If that's the case, ok. But if not, it was making my son feel embarrased.
#7. Please meet with each of the teachers (or send an email) and let them know you truly appreciate the extra time and care they're showing to your child, but to please always remember that these kids want to be treated as every other kid, they are kids that happen to have this extra burden, but they're not CF Kids.
#8. One other issue that arises is often kids with CF don't look like they're sick most of the time. My son bounces about and then later crashes, then is back to bouncing about often within a few hours. It's hard for someone not used to CF and its effects to realize just how much that kid is doing, the number of pills, air clearance therapies, needing more rest, etc. It's often called an "Invisible Disease" because of this. Explaining this plus showing the list of meds/treatments my son does daily really helped the teachers understand. This sometimes becomes an issue when needing to modify homework etc so if they know your kid is working harder and sleeping less than the healthier kids, it just helps overall for them to have some kind of an idea.
#9. Ask if the homeroom teacher will be a primary contact. This allows you to send one email when your kid is having issues and it also helps teachers not be bombarded with multiple emails.
#10 have fun! We've found middle school to be a good experience.
TreasureGoddess
Member
OH #11....ask for all teachers to make sure to leave a note for any substitute teachers that your child is able to leave the classroom should they need to with no questions asked. 
That was a whopper a few times that I learned the hard way.
That was a whopper a few times that I learned the hard way.MotherofCFBoy11yrs
Member
At my son's school they know that he has CF but we haven't had to make any arrangements because of it. He is now in 6th grade and he has pretty much never taken his enzymes at school. When he was younger I tried to get his teacher to help but it never worked in the long run, and my son would kill me if I got the school nurse involved. So he has a substantial breakfast (more like lunch) before school, and he takes lots of water and no-fat chocolate milk in his bag and I let him buy one sugar free Coke at school. He usually skips the canteen so he has more time to play (like a number of kids in his class). When he gets home he is ready for another big meal. Fortunately school days here are pretty short, usually 5 - 6 hours. He takes his medicines and nebs after school.
mnuelreyes
New member
sueharris269
New member
Even with a 504 in place, I put together a packet of info for every teacher, nurse (she gets 2 because sometimes nurses rotate schools), and administrator, and PE coaches at the beginning of every year. So many have no idea what CF is, and what (your) child goes thru every day. Don't forget PE coaches because they are the worst when it comes to keeping an eye out ~ so many kids running around. The one year I got them out late (usually do by 2-3 day), one teacher got on my son because he was making (his normal)noise clearing his throat and she thought he was trying to be disturbing. She was very apologetic after finding out the real reason.