Our little girl w/ CF will be starting kindergarten next week and I am so nervious and worried. She has never been in daycare or with many kids for extended periods of time. She hasn't been sheltered totally, she atends a youth group once a week for 2-3 hrs, go's on play dates, has lots of friends (including a big sister w/ tons of friends)...but she hasn't been in a class room w/ 20 other chidren for half a day. I know she'll pick up a few bugs along the way and miss a few days of school here and there. One of my big worries is how much to tell the other parents and teacher. Part of me wants to inform the other parents of why she coughs so much or why she has a runny nose most of the time, but then part of me doesn't want to have the other kids and parents judge her for having something that they don't fully understand. The school has been informed somewhat. We have held fundraisers for CF (a penny drive) between our older daughters classes and collected donations for the Great Strides walk each year. So the school is somewhat aware and I'm sure her teacher is aware to some degree. I plan on giving her more information on CF at the parent night next Monday. But I would like some input on how much information, and what kind of information, along w/ some input on how to handle the other kids and parents. Thanks.
Starting school
- Thread starter anonymous
- Start date
Hi,Last year my daughter started in a 2 year pre-k program just 1/2 day, 2 days a week but i was a wreck! Rachel would have to go to the nurse to get her enzymes, I was concered about other people sending their kids in to scjool when they knew they were sick....... So I told everyone who needed to know as much as I felt that they needed. Her teachers and teacher's aid knew and so did most of the parents in the class. I let them know by way of conversation when we were all talking about how nervous we were. I just would say something like "Rachel has health issues so I am really worried about her picking something up....." They would usually ask what her problem was and I would tell them. This way they were also aware that if they sent their child to school sick it might put Rachel in the hospital.I know some kids think that having CF should be a secret but I don't want Rachel to be ashamed of having to take meds to stay well. I do not want her to be ashamed of her CF. She tells EVERYONE about CF and her special lungs.To alleiviate some of your worries, Rachel was only out "sick" once. She has a g-tube and she had a painful infection in it and we could only get in to the doc's office that day. She never did pick up and bugs at school, as far as we know. She was one of the healthiest kids there!Good luck!Andrea
Kindergarten is a gamit of emotions for any mom, let alone a mom who's kindergartner has CF.My son starts 1 st grade today, and we implemented some interesting procedures at his school.IN Kinder, his teacher has to send him to the school nurse twice, one time for an enzyme with lunch, and later for a gatoraide during recess. I was worried about th enegative and added attention, but his teacher turned it in to an AWESOME experience for my son, and soon he was popular and not afraid of saying "Cystic Fibrosis". I helped Sam prepare a little book/talk explanation of CF to his classmates, as Sam was hospitalized twice in kinder and it drew attention. Anyway, I am incredibly pleased and impressed with my sons school and the entire staff's wonderful support. In first grade they are sending a letter to the parents letting them know there is a child in their childs class with CF so please do not send your child to school ill type thing.I also have some ideas on a 504 plan if you are interesed let me know and I will share what has worked for me.I would love to hear more about the penney drive!
Please talk to the Teachers & other parents! I wasn't sheltered, but did not have a lot of exposure to other children. I went to kindergarten in a big city school 35 +( a long time ago) I caught everything. We didn't know I had CF. Everytime I would start coughing, they would send me home. I would be home for a few days, see a Dr. get a shot & then go back. After a few days, I was coughing again. It was in & out all year. I missed most of the year, and the same with first grade. They talked about holding me back a grade & it was a real struggle. My parents worked with me a lot, so I wouldn't get behind. We moved in second grade & I was in a classroom with only about 10 kids & did much better with my health and studies. By third grade I was stronger & did OK. If the school had known, they wouldn't have sent me home all the time. I also agree, that other parents need to realize when they send their child to school sick, it is endangering others. I know kids can pick on others, but I think if handled properly, it would be a plus not a minus. MARY55W/CF
My son will also be starting kindergarten next week - I have already talked to the school nurse and have set up an appointment with the principal to set up a 504 plan. I know how you feel, part of me is so excited to see him start such an exciting time of his life, the other part of me is worried about what might happen. My best advise is to talk to as many people as you can - in my opinion knowledge is best - talk to the teacher, the school nurse and the principal. They should be great resources of how to handle having a child with CF in the classroom. By law, you are allowed to set up a 504 plan detailing a "plan" for everything from enzymes, to recesses, to coughing, to bathroom breaks, etc. You can also stipulate extra "just-in-case" plans, ie. home schooling if your child is in the hospital, etc. At Sean's last check-up (last week), I talked to the social worker about CF in the classroom. Although we want Sean to be protected, we also want him feeling comfortable and normal. She suggested that we give Sean a few weeks or months to adjust to school, and then have him bring in all his equipment for a "show-and-tell" about CF. She even suggested that I talk to the teacher - sometimes the teachers have a "star of the week" - she said something like that would be a great way to introduce CF - that way Sean would have the chance (just like everyone else) to talk about himself, lists all the things he likes to do, and mention CF along with it. That way, to his friends, he simply won't be the kid with CF, but he will be the little boy who loves superman, soccer, riding bikes, playing with his sisters, drawing pictures, singing songs, and who also happens to have CF. Last year, I actually went into Sean's preschool classroom. I had Sean try on his vest for everyone and I let everyone touch his "percussor machine" - they all laughed and thought it was great. I explained to them that everyone is special and different - some people have blonde hair, some have brown, some people wear glasses, some don't, some people are tall, others are short, some people have CF, while most others don't. I told them that Sean has to take medicines every day and then stressed the importance of only taking medicine that your doctor said that you should. I brought in his x-ray of his lungs and told him about his "special doctor" who checks to make sure that his lungs are healthy. I also told them that there are some "good things" about CF - I told them that Sean is supposed to eat lots and lots of food and that his doctor tells him that it is a good thing to eat things like ice cream, peanut butter, chips, ketchup, hamburgers, etc. every day. I also told them that because of CF, Sean is supposed to run around and exercise his lungs as much as possible - that means lots of swimming, riding bikes, playing soccer, and playing tag. Basically, at that age, most of the kids really didn't understand what I was really saying, but it helped to explain to them about the enzymes and (most importantly) help them not ask any questions and make Sean feel uncomfortable.As far as parents, I did the same thing as Andrea for Sean's preschool. I just made a point to slip it into conversation. I would love to hear anyone's suggestions about a 504 plan. We are setting up Sean's next week. I have heard that I might be able to request things like having his enzymes kept in a lock box (since they aren't "real medicines" and can't hurt a child if accidently ingested) - that way he doesn't have to go the office every day where sick children are waiting for their parents to pick them up. Other things I have heard are unlimited bathroom breaks and allowing Sean to keep a water bottle at his desk.Good luck with school. If you or anyone wants to chat more about this - my email is robertnkatrina@comcast.netKatrina --mother to Sean (5) w/cf, Carolyn (who will be 4 in a week) w/o cf, and Allison (who will be 2 in 3 days) w/o cf 
Hi, I'm a 22 year old with CF in college now. After reading all the advice the other parents have given, I have to say I agree whole heartedly. In my personal experiance, my family was always 110% open about my CF. As a child starting kindergarten, I already understood my condition very well, that it was inherited, and that no one else in my class had it. I don't know how interactive you are with your daughter about the details of our disease, but be as open with her as you can. I think it helped alot that I could answer questions that adults and friends had by myself. Maybe come up with questions together SHE could ask her doctor at the next visit (and make sure they answer HER, I remember a few that talked only to my mom). I have always been comfortable telling people about my CF, and I think every person I went to school with in high school knew I had it, even if they didn't know me that well. I'd shout it from the roof tops! I know that sending your baby off to school is frightening on its own, but do not worry about people judging her, most won't, and those who are foolish enough to will learn to see her as a person and not a case of CF. There were times that were tough, but she will learn how to deal with adversity. She will develop crucial skills in dealing with these kinds of people long before her peers. The more people know the better. I have come to realize that my CF has made me the person that I am. Not that I didn't have a sparkeling personality to begin with<img src="i/expressions/face-icon-small-wink.gif" border="0"> but my outlook on life has been shaped by it. I don't mean to be rude in saying this, but I sometimes think that parents fear that they themselves will be judged by others, as if they did something wrong. Don't think that for one minute. Ever.
Hi. My baby starts school tomorrow too! I was beside myself with woory but I feel better now that I have talke to the school nurse, Maya's teacher and principal. They are going to allow the teacher to keep the enzyme in the classroom (locked in her desk) and she or her aide will give Maya her enzyme before snack and at lunch. In KG the teacher goes to the lunchroom and sits with her class so it should be pretty simple. I am planning to send her snack and lunch and will write down the number of enzymes she needs with each. I also made a list of other items she might eat at school and the number of enzymes for them (she may have icecream or a birthday cupcake, etc.). I also talked to them about unlimited bathroom breaks, to never ever deny a bathroom break, that she be allowed to have a water bottle at all times, and that she is not to go near a water fountain! I also told them to call me if another child was sick and was there for whatever reason and I would come get Maya out of school. You probably haven't thought about this, but I needed to get special permission so she could have access to the salt shaker at lunch! I guess in general, kids aren't allowed to have salt. She needs it and loves it! The teacher and nurse seem really nice and I feel that she will be well taken care of. I will probably shed more than a few tears tomorrow morning, its bittersweet for me, wish us luck! Good luck to all of you out there too!Lucy (mom to Maya 5, w/ CF and Nina 2, w/o CF)
Please correct me if I am wrong - I am also just learning about a 504 plan. Basically it is a law that mandates that schools can not discriminate against students with medical needs. In a nut shell it is a written plan that parents and the principal draft together listing various "needs" our children might have. For example, you can ask that enzymes be kept in the classroom (both for convenience sake as well as health reasons - ie. the student doesn't have to make daily trips to the office where sick kids might be waiting for their parents to pick them up). You can request that a water bottle be kept at the child's desk. You can request that the child be allowed unlimited bathroom breaks. Anything that you think might help your child you can discuss with the school and "request" it as part of your plan. I have heard of some parents requesting that students be moved away from children showing signs of a cold, etc.; but my school said that is not realistic b/c they can not play "watch dog" to every and any signs of sickness. I am meeting with our principal on Tuesday, so I will know a lot more about them at that time <img src="i/expressions/face-icon-small-wink.gif" border="0">A 504 plan also is a plan that protects your child in the case of excessive sick days (ie. hospializations). You can request that the teacher keep in daily contact with the student so that they are able to maintain their school work. I think you can also request things like home schooling, if the child is out sick for a week or two.The best thing for you to do is call your child's school and ask to speak with the nurse and/or principal about setting up a 504 plan meeting. At Sean's school, I had to write a formal letter and address it to school nurse, the district nurse, and the principal. Once you write the letter, I think by law the school must respond to it within a set amount of time (I think they must respond within a few days). I wrote my letter back in June, but we are setting up the meeting for this week b/c we wanted to include Sean's teacher in the meeting and we wanted to wait until we knew which teacher Sean had.I am hoping that Sean's school will also help guide us through this process and (hopefully) give us some good suggestions on what they can to do make Sean's school experience fun, happy, normal, productive and HEALTHY!Another great resource for parents educating teachers is in www.cff.org. There is a form called "A teacher's guide to CF." I print it out for all of Sean's teachers and coaches. It is a detailed explaination about Cf - it gives the teachers enough information so that he/she will know and understand the different needs that a child with CF has. For example, it explains that a child with CF will cough frequently, but he or she is not contagious. It is a great resource.If anyone has any more information, I know I also would appreciate it. I am nervous about the 504 meeting - I want to make sure that I cover everything that needs to be covered, yet at the same time I don't want to appear overanxious <img src="i/expressions/face-icon-small-wink.gif" border="0">Katrina -- mother to Sean (5) w/cf and starting K in 6 days, Carolyn (who will be 4 on next Sunday) w/o cf, and Allison (who will be 2 on Saturday) w/o cf
wow, this is amazing. a 504 plan, how the child would manage at school...i never had those stuff. i only made my CF "official" when i was in 10th grade, i sort of "came out" with it during a biology class, because we studied the breathing organs and my teacher, who has just found out, had asked me if i could and wanted to take over the class and tell kids about CF. so i did. it was great, everybody were really understanding and it finally made it clear why i was coughing all the time and why i was in the hospital. one girl came to me and told me that i am brave beyond what she can even think of. anyhow, so only then my teachers knew what i had, but there wasn't anything official about what to do in what case. the school nurse always let me go home without mom coming to pick me up, because i went home a lot and mom couldn't get out of work. and some teachers told me that i could leave class without asking, for water or air or anything. enzymes were always my responcibility, without teachers or nurse knowing, so i didn't take them, so that kids wouldn't ask what's that.my parents never thought of that aspect of CF.i think that's great that all the moms out here do think of it and make all that effort! god bless.
Juliawmurphy
New member
I have questions regarding how to make my daugher, Olivia (5 1/2) w/CF more comfortable at school ABOUT her CF. She just started Kindergarten and this is her first full week. Already a little girl on her bus opened her backpack and wanted to know why she had "baby wipes." Olivia said she was embarrassed. I didn't know what to tell her. Kids want to know why she has to go to the nurses office everyday for enzymes. And she almost didn't get on the bus this morning because she had, "boo boo belly." She still wanted to get on the bus, but I didn't know if she would be able to make it to school. I don't want her to be "embarrassed." We are very open about her illness, and she is also very knowledgable about CF....but how do you protect her heart? What should SHE say about having to go potty all the time? about the wipes in her backpack? Should she be allowed to drink from the water fountain too? What can I do, as her mom, to help her? to give her the right answers?Julia (mom to Olivia 5 1/2 w/ CF and Amy, nearly 2 w/o CF)