two CFer's in the same school

[anonymous]

HEy guys, this is really helping, truly. what I don't understand if you will, most of you are suggesting without pregetis*spelling. that my daughter changes or moves school. I wonder why you don't feel the other parent should start her child somewhere else? Seeing has she hasn't started anywhere yet, nor has she made friends. At the same time, what even frustrates me more, being judgemental and all, not only did she not show up for the meeting, but her sister the childs aunt, is the one who speaks and voices her opinion. I have met her in the past and ironicly, she took over my CF chapter in our town. I had passed her all the info I had on CF, and so forth, and she is now vice president of the chapter. She obviously did not read the materials I had handed her, cause she would have realized that she would want to keep her niece far away from other CFers for her own protection. After all, the CCFF thinks we should keep them arms lenght from each other for short period of time. Anyway, really keep all the comments coming, I need to hear it all, but at the same time, truly as her mom, stressed as I am, I don't think I could go anywhere but her school knowing the other little girl was there. I would put myself in the hospital, worrying and I couldn't handle it. I meen their have been other situations such as bullying and stuff and I was there, no questions asked. I just don't know how I can seperate myself from it all ...any Ideas????????
take care

 

[anonymous]

Hey it's me again, I'm sorry, I understand that most of you probably have CF and are of adult or even teanage yrs. so don;t take the (keep you all away from me personally,) just remember how your parents would have felt, doing the best they could to protect you from all the bad in the world. Now has adults it seems insulting that we wish not to have you near us (CFers) but as adults you should understand, that you can difer right from wrong for your own health at your present age, but my daughter doesn't even know the depth of her illness and/or the consiquences of her behaviour so if she chooses to associate with certain individuals. At the age of 5yrs. take care

 

[anonymous]

It would be nice if the other parent would take their child elsewhere, and you could certainly ask her to do that, but I think if you asked the school to ask her to take her child elsewhere,
#1, the school wouldn't do it and
#2 like has been mentioned, the other girl's parent(s) would possibly sue the school for discrimination if they asked them to take their child to another school due to health concerns.
That's my reasoning for suggesting that you take your child elsewhere.
Have you addressed the other child's mom about your feelings? It sounds like it's hard to even see the "real" parent, though<img src="i/expressions/face-icon-small-confused.gif" border="0"> but if you can, tell her of your concerns
Elle

 

[anonymous]

Maybe it's just me but don't you have to go to school where ever the district you live in says you have to go? I mean, other than home schooling or private schools, I didn't think we had a whole lot of choice. I know in my area you don't. You go where you are assigned based on where you live. There is really no negotiating. From what I read your child is going to be in 1st grade and the other child is 1 year younger... In my figuring that would put the other child in Kindergarten. Since this will be her first year of school I would assume that the parents just enrolled her where she was supposed to go. I understand your concern but there is no way you can always assure your child will never be exposed to another CF child. I imagine she goes to CF Clinics, right? I have 2 kids with CF and they typically don't culture the same things. Honestly I have never asked the schools where my children have gone if there is another child in the school with CF. While I understand wanting to know, there is a privacy issue there. There is no way you can be sure your daughter is the only child with CF in that school...and what about when she gets older and gets a job. It's a part of life that we can't avoid. Also, consider all the other kids in that school that do not have CF. What do you think they are carrying around that no one knows about. At least with CF they get cultured and treated. Other kids could be carrying anything around and never know it.

One more thing. I am not saying that your daughter should change schools or anything, but to say that it would be detrimental to her health seems a bit extreme. She's only in 1st grade. There are much more traumatic things that she could experience than changing schools in 1st grade. If this is really bothering you this badly, maybe it would be worth it for you to move her. If you really think she is at a big risk of catching something really bad, that seems to be more detrimental to her health than changing schools. Just my thoughts.

 

[anonymous]

It seems to me that people are suggesting (without prejudice) that YOU move your daughter is because YOU are the one who is coming on to this site and expressing that YOU have a problem. Therefore, YOU need to do what is going to make YOU feel most comfortable. This is a concern YOU have, therefore it can only be resolved within certain paramaters. You can not make other people do something, and you certainly cannot make them switch schools. I see why this parent might be coming to this particular school because as you mentioned they have already been "trained" in CF care and that would appeal to me as a parent. Your concerns should not deprive this parent of the benefits of a school trained in how to take care of a CFer.

If your concerns lie in the fact that this mother doesn't even show up to a school meeting (and I don't care if she sent the "JUST a boyfriend" person or if it was the spouse or whoever, BOTH parents should be there for an initial meeting like that) then I think you should bring that up to the school and this other parent. That would be a valid concern and if the "negligence" on the mothers part keeps repeating itself, at least you have reported the problem.

There are certainly dozens, if not hundreds of situations where CFers go to school, sometimes even without the child (and child's parents) knowing they have CF-with all these late diagnoses coming out and such. CF has been around for centuries, and in the last few decades you haven't heard of any problems regarding schools. As long as they are kept in separate CLASSROOMS (not schools) and your child observes and follows hygine guidelines there shouldn't be a problem. You can not spend you life isolating your child, and depending on your childs age you need to make the child responsible for staying clear of those people they should not be around (in this case the other CFer, as they get older, bullies, kids who do drugs, steal), it's good practice to start young.

I understand where you are coming from with your concerns, and I understand why this parent might have choosen this school. Until they have done something "wrong" though, you really can't do anything about it short of worrying yourself to death-which I wouldn't recommend. Many children have shared schools with other children with CF and they are just fine.


Julie (wife to Mark 24 w/CF)

 

[anonymous]

Hi, I feel for you on this one. After my daughter was diagnosed last year (just after her first b-day) I felt really good about the move we had recently made to our small town (2 elems, 1 middle & 1 HS in our district) bc I knew that chances were there would not be any Cfer's in school with Sydney....I just found out a month ago that there was a little girl born this winter that has CF - she will most likely be in the grade below Sydney in school - which bummed me out for the reasons you are worried. I am not sure what the best thing is to do but I suppose I would give it a try and see how it goes. If your daughter gets sick more often, then maybe you should think about switching her. Also, keep in mind that there is always a chance that the other girl may end up going to another school before too long. Her situtation may not be very "permanant" (since it sounds like boyfriend isn't too serious - yet??) and who knows what they will do...as a former teacher, I saw many kids come and go. It is too bac that they are choosing this school bc the school is "trained" in CF...you might try discussing this with administration to see if they could possibly "train" another school since that would be safer for both girls.

Anyway, I know this is a tough topic and I also wanted to tell you that I didn't read any of your comments as ignorant or whatever....

Hugs,
Kelli (mom of Sydney 22 months wcf)
<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/">http://sydneymyers-ivil.tripod.com/</a>

 

[anonymous]

I have already posted on this topic, but i really feel that it is unfair to ask the other parent or even expect the other parent to move their child because she has CF. Like i said before my daughter does go to school with another CF child and i could never imagine asking the parent to move her child and would be absolutll dumbfounded if she asked me. I consider myself a good mother and I am always on top of my daughter's disease and her treatments, obviously I do not want her to culture b cepacia and that does worry me, But like another poster said there are other children in the school carrying other bacterias that are not good for your child either, also in my school district you go to school where they tell you to go depending on where you live. How would you feel if other parents did not want your daughter around their children because of her CF, or how would you feel if they asked you to move your child out of the school due to her illness. Just one more thing, it would be unfair to suggest that your child would culture something from this other child (not unrealistic but unfair) they, either one could culture something from being in the hospital or from even going to clinic, at clinic our children are not just around one other CFer , they are around many. Obviously all parents are different and it is also unfair to think that this woman may not be a good mother, maybe there are other issues that you do not know about in her life that keeps her from some of these meetings. I personally would be there but it is unfair to judge her for not. Maybe she is really sick herself or maybe she is the only parent working and she has to work, everyone handles things differently and I personally do not think that it is fair to judge her.

 

[anonymous]

Hi - The school my son went to was very good about working with our requests regarding 2 children with cf in the same school. Each child used sep. bathrooms. I requested that my child only drink from his water bottle and not use water fountains. The nurse staggered the timing in which they would come to her office for enzymes and she did it in the hallway so as to not have them in her room with all the sick kids. It is def. a personal decision. Ours has worked out nicely. Best Wishes and good luck. Jo Ann

 

[NoDayButToday]

<blockquote>Quote<br><hr>Maybe it's just me but don't you have to go to school where ever the district you live in says you have to go? <hr></blockquote>

Yes in general this is the case, but I'm sure they would move someone if there was a legitimate medical reason (ie, a wheelchair bound student may be redistricted to a more wheelchair accesible school). In this case, the board would probably decide if your concerns were legitimate (as a mother they are, but scientifically may be another story), and then move your child (not the other, as you would be the one petitioning for the move) to another school.

About moving schools- I switched schools in the beginning of second grade, and it wasn't detrimental to my development.

 

[kybert]

i for one would know that if you talked about me the way you are talking about this 'other' girl, i would be VERY upset. you are talking about her as if she was a germ ridden alien. it is also highly unlikely that your daughter will catch anything if they are put in seperate classes. id be more worried about the non cf kids level of hygeine. and dont assume that a child who is not in good condition has been neglected. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[anonymous]

right kybert. shes a five year old girl. also good health at young age is pretty much luck even if you have great parents, so get off your high horse of thought that its you who is keeping your daughter healthy. i mean, it is sorta. but not all. your kind of disgusting the way you think you can just be like 'get her away' or sue....

 

[Purplelungs]

OK I was thinking last night and decided I need some more info if you wouldnt mind....
How old is your daughter? How old is the other child?
Is this other child just starting school all together? Is she going to be in the same grade?
How big is this school?
In general how often does your daughter get sick...not colds but hospital type sick?

Hmm I had other questions last night but this is all I can remember right now.
Amanda

 

[anonymous]

One question that I would have is how did you find out to begin with that this little girl has CF?
How do you know she is the only one? Not everyone is vocal about their illnesses - with one of the reasons being-how they would be treated by people such as yourself. With regards to the boyfriend not knowing anything about her meds - why would you ask to begin with? I personally know that if my husband was "quizzed" about my daughter's health he would probably say he didn't know as opposed to telling the questioner where they could get off.

And as others have said - you don't know that this mother is neglectful of her child. Everyone has different circumstances and should not be judged.

 

[anonymous]

How do you know when and if your child is in contact with another cf child? Do you take your child to the park,chuck e cheese,grocery store? Any of those places could also have another cf child and you wouldnt even know it . How would you have known that this girl was starting there if the school didnt inform you? You cant make your child live in a bubble nor should you want to i would just talk to the school like you already have been and educate your child all the time not just around this particular child but all children

 

[anonymous]

Hello everyone!!! thank you so much for ALL your comments. It will be hard to recall all your questions and opinions, so bare with me, and I'll try and answer you all. First, my daughter is Five just recently. She is the youngest in her class and her brother is just starting JK. The little girl I refer to, is also starting JK in the same school, that is how I found out ( besides the boyfriend screeming out "my daughter has CF, how are you to give out pills"?) AS I heard those words, I casually made my way towards him and started up a conversation. No he wasn't being ovasive, Just naturally stupid!!!!. Now, let's see, yes theoretically, you do attend the school in your district, however, I chose a school outside of my district cause I did my homework sort of speak, and that 's how my daughter ended up where she is. Through research and questions and YES, I did ask them if their were other CFer's cause it is a health issue!!!! I was told that no other CF er would be considered, because of the b.cepacia and other viral infections that are commenly past within CFers. A new principal started and wasn't aware of the promise. Anyway, if you think about it, the two girls are too little to comprehend the legistics of their illness. If my daughter was in the 8th grade, and a CFer was starting school JK, I would have NO problem. However, I, yes you are right, I am only partly responsible for her good health. She was born very healthy, cause I didn't smoke during pregnancy, nor did I do drugs, booze or anything for that matter. Now, She goes to CLINICS, and since birth has always!!!!! not just once but ALWAYS worn masks and never plays with the toys. She pushes the elevator buttons with her elbows and never complains ..not once! when she goes to any hospital, which at five she's never been admitted yet, or regular walk in clinics she wears her mask. School is an all day, contact, possibly during recess and/ or washroom breaks, I don't want to risk it. Anyway, the other child will not be affected by the choice of another school, nor will her mother care. Like I said in the other posts, I have met the family three yrs ago and at that time, the aunt didn't know how to feed her either. The mother has yet to be seen in public. I really dont' care what her circomstances are, my first and only concern is that of MY CHILDS!!!!!!!!. I dont' feel sorry any more for her as I would for my friend who has two autistic children and one who has adhd. So with this is mind, I will keep you posted. I gave birth to my child, not everyone elses, and you make your choices in life..I chose to devote my life to my children, that is my choice, her circumstances aren't my problem cause she has made her choices as well. Not trying to be insensitive, just realistic. It is called, self-preservation. Survival if you will. thanks and keep all the comments coming. It helps.

 

[NoDayButToday]

Can you clarify whether you are in a public or private school? If it is public, the school legally had no right to ever promise you to not admit any other CFers-- the right to an education in the US school system is a major right offered to children; they can't REFUSE a student districted to their school.
I understand as a mother your concern, but I can't help but think that you feel you are the more 'right' party in this situation. What if YOUR daughter was the younger student and the other CF family and school started to push you out? Repeatedly emphasizing that the mother doesn't care for her child is out of bounds, she may be uninvolved, but that doesn't mean she doesn't care for her child.
I will also say one more time that although the doctor feels it is a bad idea, and most parents would have an aversion to it, I switched schools in second grade and am doing well socially; I also think if you ask most people, their best friends from kindergarten are not their best friends today (particularly in the case of girls).
This is offtopic a bit, but I couldn't help but take offense to your comment "She was born very healthy, cause I didn't smoke during pregnancy, nor did I do drugs, booze or anything for that matter." Neither did my mom (she gave up EVERYTHING even advised to be given up), yet I came very close to death as an infant. Mostly because CF is genetic, not something CAUSED by a parents actions.
Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.

 

[anonymous]

Hello, I again feel the need to post to this topic again. My daughter is pretty healthy for a CF child as well and it was not because i did everything right during pregnancy! I smoked during my whole pregnancy ( not something that i am proud of ) just something that i thought you should understand, it is not what you do or do not do during your pregnancy with your CF child!!! I also feel that since you moved your child to another school district because of the benefits for her and her CF than maybe you should be the one to move your child back to her own school district. ( not trying to be rude ) but it seems you think that maybe you deserve better treatment because you think that you are a better mother. I know how emotionally hard it can be having a child with a disease but you are no one to judge the other mother and you seem to really not care at all about the other child or mother at all, which i find very offensive, ( if you do not care for her and her situation than why in the world do you think that she should care for yours?) I also agree that the school should not promised you that there would be no other CFers in the school. Maybe they just promised you there were not any at the time you asked because as far as i know, the school system can not make any such promises to anyone ( i have a friend that works for the school system) My daugher also wears a mask at every clinic appt and throughout the hospital until we leave the building, My daughters PFT's 2 weeks ago were 108% and yes she has been in the hospital 4 times in 9 years , she cultures MRSA and pseudomonas,. she is still healthy.

I would hate to think that you would want to shelter your child, I have a nurse friend that i work with and she had a brother with CF. Her parents sheltered her brother from birth on until he turned 18 years old and decided that he wanted to do what he wanted to do. Unfortunatly he died a year later. My friend has told me numerous times that no matter what i do, DO NOT SHELTER MY CHILD!!!!! Her parents would not let him have friends stay over and he was not allowed to stay at others house, he was homeschooled and he was never sick as a child. I think that every parent of a CF child should encourage their child to do everything that they possibly can do and to enjoy life to its fullest.

i truly undrestand how you feel because there are times when we all want to shelter our children and we want to protect them from all harm. People with CF will at some point culture some kind of bacteria and i hate to tell you that there is nothing that you can do to stop this. I hope that you will really reconsider how bad you feel about this other parent and your thoughts about her child changing schools because her child is just as important as well. One more thing, i really wish that you would not be so ruthless when it comes to the other people because for all you know they could just as well be on this site too.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[CFHockeyMom]

Again I say that you can't control what the school does or what the other family does only what you do. As much as you'd like to shelter your daughter it isn't realistic. Part of being a parent is learning when to let go so your child can enjoy life (CF or no CF). This seems more like a control issue (almost obsessive) than anything else.

 

[anonymous]

Although I understand where you are coming from with your concerns and such here is the bottom line. Yes this site is to vent, ask questsions, get answers, share stories, get advice, hear other personal experiences... But you have had your quesition answered over and over again. Some people agree with you, some don't, some have ideas and suggestions (which I might add you seem very non-receptive to) and some think that you are being rude and insensitive. It seems that now all you are doing is whinning, not even venting anymore.

At first I felt for your situation and didn't say anything because I am not a parent in your situation. Although, as I see this post go on and on and hear you do what I would consider nothing but whinning like a child, I decided I must step in and say some things. As I posted previously, this is YOUR concern so only YOU have the ability to rectify the situation. If YOU feel there is a problem, YOU should consider YOUR options in what to do with YOUR child. As someone said before, what if the shoe was on the other foot? How rejected would you feel? How rude would you consider the other mom to be? what if you picked the school because you were looking for a school with prior CF training? I also have to agree with Kaitsmom who said "if you do not care for her and her situation than why in the world do you think that she should care for yours?". You have stated numerous times that you don't really care for her situation, how inconsiderate of you. You should be ashamed of yourself, you are an adult and should be compassionate about someone in a similar situation as yours.

You mentioned that your daughter is too young to start teaching responsibility of her CF care to her. Oh contrare, I beg to differ. At five years old I was in charge of feeding my cats, cleaning litter boxes daily, I assisted my mom once a week in cooking a complete meal, I recieved $15 allowance a week for doing the dishes, folding and putting away my own laundry and an extra $5 for scrubbing the bathroom on the weekend if I so desired the extra $$. With that $20 a week I was taught how to create a budget (yes at 5 years old), I had money going into a savings account, money into a separate envelope for friends birthdays (I was required to buy all my friends gifts from my money), money into an envelope for toys (play makeup, doll clothes, gadgets...), money into an envelope for clothes and money into an envelope for discretionary spending. I know I am not the only child raised this way, and I only mentioned it to highlight the fact that you CAN teach a child this young how to be responsible, especially for their health. I feel that your lack of even attempting to teach these things to your child (which I only have to assume because you stated you think your child is too young right now) is irresponsible on your part.

I think you do have the right to discuss your concerns with the other parents (or mother), but I would have to say that if you approach it by saying you thing they should move their child-you will accomplish nothing. It might behoove you to meet with them to discuss things such as agreeing to keep them in separate class rooms, even arrange for classrooms in different ares of the buildings, agree and talk to the school about ensuring they are always at different recesses and lunches. Agreeing that both of you (you as a parent and the other child's parents) will be very sincere, thurough and persistent in teaching your children about hygine, hand washing, covering mouthes when coughing/sneezing... (even if other kids don't do that). Maybe the school can install a handwashing unit outside for recess and in the lunchroom, and then encourage your children to use it and explain the reasons why. 5 year olds are NOT to young to start learning and understanding these things. You are depriving your child of valuable information if you really believe that.

I think it's time you start taking action on the situation (like requesting a meeting with the other MOTHER and BF if she chooses to bring him) instead of going around on circles on this site.


Julie (wife to Mark 24 w/CF)

 

[rose4cale]

I do agree with Julie that 5 yrs old is not too young to take in vital information. My daughter is 5 and they are learning phone numbers, addresses and such. She's been reciting the alphabet and counting in Spanish since she was 2. They are old enough to attend school and learn what they have to teach, so she should be old enough to learn about taking care of herself. By now she should know about handwashing, covering coughs, etc. anyway.

We're not into the vest yet, but another family I know has a 4 yr old who gets up on her own to do the vest and she is swallowing her enzymes whole. That sounds pretty capable to me. I am confident that is how my son will be raised as well. At 2 yrs old he know he can't drink from water fountains, he has to wash his hands before he eats and after diaper changes.

But PLEASE be careful how you discuss this other girl and her family with your daughter. Don't shed a negative light on them. You don't want her to treat them like an outcast because other kids might follow suit and do the same to your daughter.