Parents Perspective

schulemm · Mar 16, 2011

I am a special education teacher. I am currently working towards my certification and have to write a paper on CF. I had a student in my class last year with CF. I did as much research as possible, but now I want to hear first hand from parents about the trials and tribulations they have had to endure. Here are some questions I would like to know more about if anyone is interested in sharing. I will not use any names and all information will not be shared with anyone except for the professor.

What are the greatest challenges you face as parents of children with CF? What does your family life look like? Do you have to change anything in your home? What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers?

schulemm · Mar 16, 2011

I am a special education teacher. I am currently working towards my certification and have to write a paper on CF. I had a student in my class last year with CF. I did as much research as possible, but now I want to hear first hand from parents about the trials and tribulations they have had to endure. Here are some questions I would like to know more about if anyone is interested in sharing. I will not use any names and all information will not be shared with anyone except for the professor.

What are the greatest challenges you face as parents of children with CF? What does your family life look like? Do you have to change anything in your home? What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers?

schulemm · Mar 16, 2011

I am a special education teacher. I am currently working towards my certification and have to write a paper on CF. I had a student in my class last year with CF. I did as much research as possible, but now I want to hear first hand from parents about the trials and tribulations they have had to endure. Here are some questions I would like to know more about if anyone is interested in sharing. I will not use any names and all information will not be shared with anyone except for the professor.
 
 What are the greatest challenges you face as parents of children with CF? What does your family life look like? Do you have to change anything in your home? What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers?

Rebjane · Mar 16, 2011

I'll take a stab at this. First of all; every CF patient and family is different. Alot depends on the individual CF patient in terms of the severity of their disease. Income and resources for the family also come in play.

The greatest challenge for our family; likely this will change over time, but right now it's maintaining a normal life; the balancing act of CF treatments, Doctors appointments, and school for the kiddos and work for parents. My husband travels at times, has to work long hours so I am the primary caregiver and rarely get a break. Being a parent is a full time job, being the parent of a child with CF just takes that responsibilty to a level most people can not fathom.

Our family life: (this is a typical school day)....Wake up 6 am CF child wakes up, Coffee for me Pills for my CF child. I starts morning nebs each neb last about 10 minutes(she does 3 nebs in the am) Non CF child wakes up. Put on VEST(airway clearance system) CF child vibrates in her VEST from 20-25 minutes. I encourage her to cough at intervals while doing vest. CLock is ticking away. Non CF child starts complaining he's going to be late for school because of his sister(we are rarely late<img src="i/expressions/face-icon-small-smile.gif" border="0">). After VEST now time for breakfast, which consist of a protein bar for my CF child ( no time for a real breakfast). Clock still ticking away. More pills with protein bar, antibitoics, vitamins, etc.Kids get dressed , I remind them to brush teeth hair, get backpacks ready, homework notes for teacher. Remind CF daughter where I will be today if she needs me, my cell phone , work etc. Off to school by 8-8:15. That's just our morning.

CF child does more treatments after school. then has afterschool activites, then does a similar schedule after dinner as she does in the am, then and we to bed. Then it starts all over again.

That is a typical schedule when CF child is well; When she gets sick, we do extra nebs and VEST, calling the doc alot, balancing insurance problems, pharmacy issues, making sure she does not fall behind in school. etc etc

CHanges at home include me only working perdiem. Used to work part time but it's not feasible with our schedule. I took 4 years off from work when CF child was born, which I am so glad I did..

My expectations for my CF child for school are the same for my non CF child. She will excel, get good grades be involved with sports, friends, make plans to go to college(ok she's only 8 now but eventually). I always tell her teachers "do not treat her any different than the other kids".

My daughter is lucky, she goes to a small school, with a very supportive community. everyone looks out for each other and I feel look out for the best interest of each others kids.

Hope that helps!

Good luck with your project

Rebjane · Mar 16, 2011

I'll take a stab at this. First of all; every CF patient and family is different. Alot depends on the individual CF patient in terms of the severity of their disease. Income and resources for the family also come in play.

The greatest challenge for our family; likely this will change over time, but right now it's maintaining a normal life; the balancing act of CF treatments, Doctors appointments, and school for the kiddos and work for parents. My husband travels at times, has to work long hours so I am the primary caregiver and rarely get a break. Being a parent is a full time job, being the parent of a child with CF just takes that responsibilty to a level most people can not fathom.

Our family life: (this is a typical school day)....Wake up 6 am CF child wakes up, Coffee for me Pills for my CF child. I starts morning nebs each neb last about 10 minutes(she does 3 nebs in the am) Non CF child wakes up. Put on VEST(airway clearance system) CF child vibrates in her VEST from 20-25 minutes. I encourage her to cough at intervals while doing vest. CLock is ticking away. Non CF child starts complaining he's going to be late for school because of his sister(we are rarely late<img src="i/expressions/face-icon-small-smile.gif" border="0">). After VEST now time for breakfast, which consist of a protein bar for my CF child ( no time for a real breakfast). Clock still ticking away. More pills with protein bar, antibitoics, vitamins, etc.Kids get dressed , I remind them to brush teeth hair, get backpacks ready, homework notes for teacher. Remind CF daughter where I will be today if she needs me, my cell phone , work etc. Off to school by 8-8:15. That's just our morning.

CF child does more treatments after school. then has afterschool activites, then does a similar schedule after dinner as she does in the am, then and we to bed. Then it starts all over again.

That is a typical schedule when CF child is well; When she gets sick, we do extra nebs and VEST, calling the doc alot, balancing insurance problems, pharmacy issues, making sure she does not fall behind in school. etc etc

CHanges at home include me only working perdiem. Used to work part time but it's not feasible with our schedule. I took 4 years off from work when CF child was born, which I am so glad I did..

My expectations for my CF child for school are the same for my non CF child. She will excel, get good grades be involved with sports, friends, make plans to go to college(ok she's only 8 now but eventually). I always tell her teachers "do not treat her any different than the other kids".

My daughter is lucky, she goes to a small school, with a very supportive community. everyone looks out for each other and I feel look out for the best interest of each others kids.

Hope that helps!

Good luck with your project

Rebjane · Mar 16, 2011

I'll take a stab at this. First of all; every CF patient and family is different. Alot depends on the individual CF patient in terms of the severity of their disease. Income and resources for the family also come in play.
 
 The greatest challenge for our family; likely this will change over time, but right now it's maintaining a normal life; the balancing act of CF treatments, Doctors appointments, and school for the kiddos and work for parents. My husband travels at times, has to work long hours so I am the primary caregiver and rarely get a break. Being a parent is a full time job, being the parent of a child with CF just takes that responsibilty to a level most people can not fathom.
 
 Our family life: (this is a typical school day)....Wake up 6 am CF child wakes up, Coffee for me Pills for my CF child. I starts morning nebs each neb last about 10 minutes(she does 3 nebs in the am) Non CF child wakes up. Put on VEST(airway clearance system) CF child vibrates in her VEST from 20-25 minutes. I encourage her to cough at intervals while doing vest. CLock is ticking away. Non CF child starts complaining he's going to be late for school because of his sister(we are rarely late<img src="i/expressions/face-icon-small-smile.gif" border="0">). After VEST now time for breakfast, which consist of a protein bar for my CF child ( no time for a real breakfast). Clock still ticking away. More pills with protein bar, antibitoics, vitamins, etc.Kids get dressed , I remind them to brush teeth hair, get backpacks ready, homework notes for teacher. Remind CF daughter where I will be today if she needs me, my cell phone , work etc. Off to school by 8-8:15. That's just our morning.
 
 CF child does more treatments after school. then has afterschool activites, then does a similar schedule after dinner as she does in the am, then and we to bed. Then it starts all over again.
 
 That is a typical schedule when CF child is well; When she gets sick, we do extra nebs and VEST, calling the doc alot, balancing insurance problems, pharmacy issues, making sure she does not fall behind in school. etc etc
 
 CHanges at home include me only working perdiem. Used to work part time but it's not feasible with our schedule. I took 4 years off from work when CF child was born, which I am so glad I did..
 
 My expectations for my CF child for school are the same for my non CF child. She will excel, get good grades be involved with sports, friends, make plans to go to college(ok she's only 8 now but eventually). I always tell her teachers "do not treat her any different than the other kids".
 
 My daughter is lucky, she goes to a small school, with a very supportive community. everyone looks out for each other and I feel look out for the best interest of each others kids.
 
 Hope that helps!
 
 Good luck with your project

AleksandraKaczynska · Mar 16, 2011

I agree - all depends on the health of the child, family income and possibilities.
We live in Poland near the capital. We both have masters - I'm an architect and my husband an engenner. He runs his own business. So did I and will soon again.
When our daughter was born we stood on our heads to get out of the city and we moved just outside it to a house with a small garden. Maybe we will move further away to a region near a national park just outside Warsaw also. But so far we can't aford it.
I quit my job so I can stay home and be here always for Joanna - but I still work at home.My job makes it possible. But it's my husband who provides for the family.
It's rather hard to make end meet but possible.

What are the greatest challenges you face as parents of children with CF?:
Well - to make everyone realize how important it's to take Joannas cf seriously, not to come over with colds, not smoke and such a simple fact as to wash hands when enetring our home.(Joanna has a mild cf and no symptoms so far) People tend to hide a fact such as a cold cause:"it's christmas" or "was I not to come" and so on...

The second is to get all the needed medicines and equipment and not go buncrupt - we have to buy almost all from our own money - so it's impossible to save anything for future so far. And also to stand firm by doing the cpt inhalatiopns and medicines everyday - to teach her it's like washing teeth everyday.

A chalange is also that we don't send her to kindergarden - I don't know about school since I'll be starting preschool in 1,5 year. I guess I'ld want the teacher to be frank with me and tell me, for ex. to take Joanna home, if something is wrong or there's a sick kid in class.

Also our health care system is a big chalange - even a visit to a cf center is a problem. When she gets sick it's very hard to get to a good doctor so we usually ask them to make a payed home visist - for ex. when she got sick - really sick on tuesday - the first visist for sick kids was on monady! (the alternative was to go to the hospital which is also not a good idea for kids with cf - rooms are for about 5 kids and cross contaminations are present) and more over - she should not meet other sick kids in the waiting room... so we pay and ask to come over...

What does your family life look like?
Well - we seem not to go to visists when the flue season is up and we often come home much earlier then others - to get al the inhaltions and cpt done before Joanna falls asleep.
We started doing extra vacinations for flue and take care of our health better.

Do you have to change anything in your home?
So far no - we just keep the house very clean.

What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers? - we are not in school yet but like I wrote I guess communiaction maybe the problem.

Hope this helps.

AleksandraKaczynska · Mar 16, 2011

I agree - all depends on the health of the child, family income and possibilities.
We live in Poland near the capital. We both have masters - I'm an architect and my husband an engenner. He runs his own business. So did I and will soon again.
When our daughter was born we stood on our heads to get out of the city and we moved just outside it to a house with a small garden. Maybe we will move further away to a region near a national park just outside Warsaw also. But so far we can't aford it.
I quit my job so I can stay home and be here always for Joanna - but I still work at home.My job makes it possible. But it's my husband who provides for the family.
It's rather hard to make end meet but possible.

What are the greatest challenges you face as parents of children with CF?:
Well - to make everyone realize how important it's to take Joannas cf seriously, not to come over with colds, not smoke and such a simple fact as to wash hands when enetring our home.(Joanna has a mild cf and no symptoms so far) People tend to hide a fact such as a cold cause:"it's christmas" or "was I not to come" and so on...

The second is to get all the needed medicines and equipment and not go buncrupt - we have to buy almost all from our own money - so it's impossible to save anything for future so far. And also to stand firm by doing the cpt inhalatiopns and medicines everyday - to teach her it's like washing teeth everyday.

A chalange is also that we don't send her to kindergarden - I don't know about school since I'll be starting preschool in 1,5 year. I guess I'ld want the teacher to be frank with me and tell me, for ex. to take Joanna home, if something is wrong or there's a sick kid in class.

Also our health care system is a big chalange - even a visit to a cf center is a problem. When she gets sick it's very hard to get to a good doctor so we usually ask them to make a payed home visist - for ex. when she got sick - really sick on tuesday - the first visist for sick kids was on monady! (the alternative was to go to the hospital which is also not a good idea for kids with cf - rooms are for about 5 kids and cross contaminations are present) and more over - she should not meet other sick kids in the waiting room... so we pay and ask to come over...

What does your family life look like?
Well - we seem not to go to visists when the flue season is up and we often come home much earlier then others - to get al the inhaltions and cpt done before Joanna falls asleep.
We started doing extra vacinations for flue and take care of our health better.

Do you have to change anything in your home?
So far no - we just keep the house very clean.

What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers? - we are not in school yet but like I wrote I guess communiaction maybe the problem.

Hope this helps.

AleksandraKaczynska · Mar 16, 2011

I agree - all depends on the health of the child, family income and possibilities.
 We live in Poland near the capital. We both have masters - I'm an architect and my husband an engenner. He runs his own business. So did I and will soon again.
 When our daughter was born we stood on our heads to get out of the city and we moved just outside it to a house with a small garden. Maybe we will move further away to a region near a national park just outside Warsaw also. But so far we can't aford it.
 I quit my job so I can stay home and be here always for Joanna - but I still work at home.My job makes it possible. But it's my husband who provides for the family.
 It's rather hard to make end meet but possible.
 
 What are the greatest challenges you face as parents of children with CF?:
 Well - to make everyone realize how important it's to take Joannas cf seriously, not to come over with colds, not smoke and such a simple fact as to wash hands when enetring our home.(Joanna has a mild cf and no symptoms so far) People tend to hide a fact such as a cold cause:"it's christmas" or "was I not to come" and so on...
 
 The second is to get all the needed medicines and equipment and not go buncrupt - we have to buy almost all from our own money - so it's impossible to save anything for future so far. And also to stand firm by doing the cpt inhalatiopns and medicines everyday - to teach her it's like washing teeth everyday.
 
 A chalange is also that we don't send her to kindergarden - I don't know about school since I'll be starting preschool in 1,5 year. I guess I'ld want the teacher to be frank with me and tell me, for ex. to take Joanna home, if something is wrong or there's a sick kid in class.
 
 Also our health care system is a big chalange - even a visit to a cf center is a problem. When she gets sick it's very hard to get to a good doctor so we usually ask them to make a payed home visist - for ex. when she got sick - really sick on tuesday - the first visist for sick kids was on monady! (the alternative was to go to the hospital which is also not a good idea for kids with cf - rooms are for about 5 kids and cross contaminations are present) and more over - she should not meet other sick kids in the waiting room... so we pay and ask to come over...
 
 What does your family life look like?
 Well - we seem not to go to visists when the flue season is up and we often come home much earlier then others - to get al the inhaltions and cpt done before Joanna falls asleep.
 We started doing extra vacinations for flue and take care of our health better.
 
 Do you have to change anything in your home?
 So far no - we just keep the house very clean.
 
 What are your expectations when your children are in school? What are the greatest challenges you face dealing with schools and teachers? - we are not in school yet but like I wrote I guess communiaction maybe the problem.
 
 Hope this helps.

Ratatosk · Mar 16, 2011

We have a 1st grader wcf. I'll just briefly describe our routine -- We get up really early to start treatment, breakfast on the run, school... Then more treatments once we're home. Supper, homework --- sometimes a bath, playtime if we can fit it in -- then another round of treatments before bed. During the week we're constantly feeling rushed to make sure we get everything accomplished, so things sometimes slide -- homecooked meals, keeping the house clean and organized, me hardly having any time to exercise or relaxation....

We've been lucky with teachers, the school and making sure DS gets his digestive enzymes. One thing we struggle with is making sure DS is still treated like a normal child. All too many times we have counselors, teachers and staff thing that because he has CF that he also may have developmental delays, when in actuality, he's a pretty sharp cookie. We had a long term sub earlier this year start labeling DS, possibly autistic because he wasn't listening -- was actually being a social butterfly all too often --- and he got thrown into a remedial reading program until his primary teacher got back. It was a nightmare! The sub had some preconceived notions because DS has an IEP (for speech) and a 504 plan and she apparently has a child at home with autism... Projecting?!

Another issue we deal with is making sure the schools enforce the sick policy. Last year when H1N1 was running rampant and there were vaccine shortages -- the schools made an extra effort to make sure surfaces were sanitized, hand washing and hand sanitizer stations available, children were sent home if they had fevers; however, a number of parents would continue to send their sick kids to school OR they'd dose them with pain reliever/fever reducers and by early afternoon they spiked fevers again.

Ratatosk · Mar 16, 2011

We have a 1st grader wcf. I'll just briefly describe our routine -- We get up really early to start treatment, breakfast on the run, school... Then more treatments once we're home. Supper, homework --- sometimes a bath, playtime if we can fit it in -- then another round of treatments before bed. During the week we're constantly feeling rushed to make sure we get everything accomplished, so things sometimes slide -- homecooked meals, keeping the house clean and organized, me hardly having any time to exercise or relaxation....

We've been lucky with teachers, the school and making sure DS gets his digestive enzymes. One thing we struggle with is making sure DS is still treated like a normal child. All too many times we have counselors, teachers and staff thing that because he has CF that he also may have developmental delays, when in actuality, he's a pretty sharp cookie. We had a long term sub earlier this year start labeling DS, possibly autistic because he wasn't listening -- was actually being a social butterfly all too often --- and he got thrown into a remedial reading program until his primary teacher got back. It was a nightmare! The sub had some preconceived notions because DS has an IEP (for speech) and a 504 plan and she apparently has a child at home with autism... Projecting?!

Another issue we deal with is making sure the schools enforce the sick policy. Last year when H1N1 was running rampant and there were vaccine shortages -- the schools made an extra effort to make sure surfaces were sanitized, hand washing and hand sanitizer stations available, children were sent home if they had fevers; however, a number of parents would continue to send their sick kids to school OR they'd dose them with pain reliever/fever reducers and by early afternoon they spiked fevers again.

Ratatosk · Mar 16, 2011

We have a 1st grader wcf. I'll just briefly describe our routine -- We get up really early to start treatment, breakfast on the run, school... Then more treatments once we're home. Supper, homework --- sometimes a bath, playtime if we can fit it in -- then another round of treatments before bed. During the week we're constantly feeling rushed to make sure we get everything accomplished, so things sometimes slide -- homecooked meals, keeping the house clean and organized, me hardly having any time to exercise or relaxation....
 
 We've been lucky with teachers, the school and making sure DS gets his digestive enzymes. One thing we struggle with is making sure DS is still treated like a normal child. All too many times we have counselors, teachers and staff thing that because he has CF that he also may have developmental delays, when in actuality, he's a pretty sharp cookie. We had a long term sub earlier this year start labeling DS, possibly autistic because he wasn't listening -- was actually being a social butterfly all too often --- and he got thrown into a remedial reading program until his primary teacher got back. It was a nightmare! The sub had some preconceived notions because DS has an IEP (for speech) and a 504 plan and she apparently has a child at home with autism... Projecting?!
 
 Another issue we deal with is making sure the schools enforce the sick policy. Last year when H1N1 was running rampant and there were vaccine shortages -- the schools made an extra effort to make sure surfaces were sanitized, hand washing and hand sanitizer stations available, children were sent home if they had fevers; however, a number of parents would continue to send their sick kids to school OR they'd dose them with pain reliever/fever reducers and by early afternoon they spiked fevers again.

Treewife · Mar 16, 2011

I will touch on the teacher/school question.

With our daughter it has always (except for one AMAZING teacher) been a case of extremes.
Extreme number 1 would be the teacher that freaks, treats Ashley like an egg that will break any minute and makes everything into a tragedy therefore making Ashley feel like she is broken, different, and needing to be protected from everything. This can be bad because resilience in these kids is pretty vital. Look at any of the adults that are surviving this disease and you will see resilient people that have made accomadations but still LIVE a life, they do not live in a bubble.
Extreme number 2 are the teachers or school people that want to ignor or downplay the disease or seem to think she is using it to get out of things. Like the teacher that lit something in the science room two weeks ago and filled the classroom with smoke then wouldn't let Ashley leave! those are the ones that encourage Ashley to ignore her needs and "just try to do it" despite the obvious costs to said event. We have raised a fighter - she will do her best and only slow when she needs to. If she calls a break she NEEDS it. She is not using this to her advantage.

Treewife · Mar 16, 2011

I will touch on the teacher/school question.

With our daughter it has always (except for one AMAZING teacher) been a case of extremes.
Extreme number 1 would be the teacher that freaks, treats Ashley like an egg that will break any minute and makes everything into a tragedy therefore making Ashley feel like she is broken, different, and needing to be protected from everything. This can be bad because resilience in these kids is pretty vital. Look at any of the adults that are surviving this disease and you will see resilient people that have made accomadations but still LIVE a life, they do not live in a bubble.
Extreme number 2 are the teachers or school people that want to ignor or downplay the disease or seem to think she is using it to get out of things. Like the teacher that lit something in the science room two weeks ago and filled the classroom with smoke then wouldn't let Ashley leave! those are the ones that encourage Ashley to ignore her needs and "just try to do it" despite the obvious costs to said event. We have raised a fighter - she will do her best and only slow when she needs to. If she calls a break she NEEDS it. She is not using this to her advantage.

Treewife · Mar 16, 2011

I will touch on the teacher/school question.
 
 With our daughter it has always (except for one AMAZING teacher) been a case of extremes.
 Extreme number 1 would be the teacher that freaks, treats Ashley like an egg that will break any minute and makes everything into a tragedy therefore making Ashley feel like she is broken, different, and needing to be protected from everything. This can be bad because resilience in these kids is pretty vital. Look at any of the adults that are surviving this disease and you will see resilient people that have made accomadations but still LIVE a life, they do not live in a bubble.
 Extreme number 2 are the teachers or school people that want to ignor or downplay the disease or seem to think she is using it to get out of things. Like the teacher that lit something in the science room two weeks ago and filled the classroom with smoke then wouldn't let Ashley leave! those are the ones that encourage Ashley to ignore her needs and "just try to do it" despite the obvious costs to said event. We have raised a fighter - she will do her best and only slow when she needs to. If she calls a break she NEEDS it. She is not using this to her advantage.

elliesmom · Mar 17, 2011

We have a 17yo with cf. Some of the challenges we have had over the years have been the schools, a kindergarten teacher that "forgot" to send her to the office for pills repeatedly. But mostly teachers were helpful because we were up front with her needs. It helps that she has always known what she needs and will say something.

When we hit the Jr. high age it wasn't the school that presented challenges, but the Jr. high attitude, the "i don't need that" "i know MOM!!!" attitude. We decided that if she wanted to skip treatments, they were her lungs and her life. So, she skipped for a week and realized that she felt like crap without her treatments and decided to do them herself. She also took up running in Jr. High and discovered if she didn't do her treatments she didn't run as well as she could-another incentive not parent driven. Score!

Our family life is just the 3 of us and the dog. We had thought we would have a house full of kids, but once she was diagnosed, we chose to have an only. So we get a household of giggling teenage girls these days. We love that.

We have always had the expectations that she would do her best in school and in everything she chose to do. If she did her best on that day at that event, test, homework that was good enough for us.

As a high school student we have had to say "no" to events she wants to do, all nighters at school, all nighters at church. When she gets tired she gets sick. She doesn't like it when we say no-but we are the parents.

We changed nothing in our home. Since she was our first and only we have only known life with cf and all the drugs and therapies. It is just a part of our lives, but it does not control our lives. There are people we have known for years that have no idea she has cf, not because we haven't said anything, but because there has been no reason to.

As a teacher going into special ed and probably working with CF kids, I would suggest that you treat a child with CF just as you would any other child with the one exception that when they say they need their fluids, they need their pills, they have to go to the bathroom etc, you take the clues from the child, now if it gets out of hand, because there is always that one kid that will take it too far, call the parents and talk with them. But by all means, treat them just as you do any other child.

I think i may have strayed from your original questions but we have had a life time of living with CF and our daughter is off to college in the fall and in some ways it scares me to death, but that is a different posting.

elliesmom · Mar 17, 2011

We have a 17yo with cf. Some of the challenges we have had over the years have been the schools, a kindergarten teacher that "forgot" to send her to the office for pills repeatedly. But mostly teachers were helpful because we were up front with her needs. It helps that she has always known what she needs and will say something.

When we hit the Jr. high age it wasn't the school that presented challenges, but the Jr. high attitude, the "i don't need that" "i know MOM!!!" attitude. We decided that if she wanted to skip treatments, they were her lungs and her life. So, she skipped for a week and realized that she felt like crap without her treatments and decided to do them herself. She also took up running in Jr. High and discovered if she didn't do her treatments she didn't run as well as she could-another incentive not parent driven. Score!

Our family life is just the 3 of us and the dog. We had thought we would have a house full of kids, but once she was diagnosed, we chose to have an only. So we get a household of giggling teenage girls these days. We love that.

We have always had the expectations that she would do her best in school and in everything she chose to do. If she did her best on that day at that event, test, homework that was good enough for us.

As a high school student we have had to say "no" to events she wants to do, all nighters at school, all nighters at church. When she gets tired she gets sick. She doesn't like it when we say no-but we are the parents.

We changed nothing in our home. Since she was our first and only we have only known life with cf and all the drugs and therapies. It is just a part of our lives, but it does not control our lives. There are people we have known for years that have no idea she has cf, not because we haven't said anything, but because there has been no reason to.

As a teacher going into special ed and probably working with CF kids, I would suggest that you treat a child with CF just as you would any other child with the one exception that when they say they need their fluids, they need their pills, they have to go to the bathroom etc, you take the clues from the child, now if it gets out of hand, because there is always that one kid that will take it too far, call the parents and talk with them. But by all means, treat them just as you do any other child.

I think i may have strayed from your original questions but we have had a life time of living with CF and our daughter is off to college in the fall and in some ways it scares me to death, but that is a different posting.

elliesmom · Mar 17, 2011

We have a 17yo with cf. Some of the challenges we have had over the years have been the schools, a kindergarten teacher that "forgot" to send her to the office for pills repeatedly. But mostly teachers were helpful because we were up front with her needs. It helps that she has always known what she needs and will say something.
 
 When we hit the Jr. high age it wasn't the school that presented challenges, but the Jr. high attitude, the "i don't need that" "i know MOM!!!" attitude. We decided that if she wanted to skip treatments, they were her lungs and her life. So, she skipped for a week and realized that she felt like crap without her treatments and decided to do them herself. She also took up running in Jr. High and discovered if she didn't do her treatments she didn't run as well as she could-another incentive not parent driven. Score!
 
 Our family life is just the 3 of us and the dog. We had thought we would have a house full of kids, but once she was diagnosed, we chose to have an only. So we get a household of giggling teenage girls these days. We love that.
 
 We have always had the expectations that she would do her best in school and in everything she chose to do. If she did her best on that day at that event, test, homework that was good enough for us.
 
 As a high school student we have had to say "no" to events she wants to do, all nighters at school, all nighters at church. When she gets tired she gets sick. She doesn't like it when we say no-but we are the parents.
 
 We changed nothing in our home. Since she was our first and only we have only known life with cf and all the drugs and therapies. It is just a part of our lives, but it does not control our lives. There are people we have known for years that have no idea she has cf, not because we haven't said anything, but because there has been no reason to.
 
 As a teacher going into special ed and probably working with CF kids, I would suggest that you treat a child with CF just as you would any other child with the one exception that when they say they need their fluids, they need their pills, they have to go to the bathroom etc, you take the clues from the child, now if it gets out of hand, because there is always that one kid that will take it too far, call the parents and talk with them. But by all means, treat them just as you do any other child.
 
 I think i may have strayed from your original questions but we have had a life time of living with CF and our daughter is off to college in the fall and in some ways it scares me to death, but that is a different posting.

dee5 · Mar 17, 2011

Our child was diagnosed a year ago. CF has a pretty big learning curve. It rocks your world. I have new blog with just a few posts that articulate some of the emotions/thoughts I have had as a parent of a child with CF. Visit at <a target=_blank class=ftalternatingbarlinklarge href="http://sweetsaltykisses.blogspot.com">http://sweetsaltykisses.blogspot.com</a>

I will say the biggest issue has been finding that balance between freaking out/over protecting and being aware and reasonable in decision making. CF families make weighty decisions on topics that other families don't think twice about (social gatherings, church attendance, swimming in the lake, proper cleaning {church nurseries/day care}, sleepovers, awareness of bacteria!). So, that in and of itself, brings a whole range of issues to the forefront.

I agree with a couple of posts above regarding other people having colds. I have found that no matter how politely you request someone letting you know of an illness, they don't. I have only one friend that really considers this when thinking of interacting with our family. It's difficult to explain that a cold is not "just a cold" for us. However, I found this true before we had our child with CF. Because we have a large family ~ five children in all. A cold has NEVER been "just a cold"! It takes weeks to run through all seven of us!

Regarding school, we home school. We always have. This gives us more flexibility with our schedules. I am thankful that we are a home school family. It has made adjusting to life with CF easier, I think, overall. However, it did takes some juggling of our schedule/morning routine to get the treatments done and school started at a reasonable time. Most mornings we start by 9:00 and school until 1:00 ~ some mornings earlier.

Our little CFer has just gotten well after having a cold/flu thing (we all have ~ only one of us escaped it). He ended up on 14 days of antibiotics and we stepped up treatments from two times a day to three. This was the first time we had increased treatments because of illness. It was also the first time that an illness settled more into his lungs than into his sinuses. It was a bit disconcerting, that rattling, chesty, juicy cough.

Hope this helps. Please feel free to visit the blog!

dee5 · Mar 17, 2011

Our child was diagnosed a year ago. CF has a pretty big learning curve. It rocks your world. I have new blog with just a few posts that articulate some of the emotions/thoughts I have had as a parent of a child with CF. Visit at <a target=_blank class=ftalternatingbarlinklarge href="http://sweetsaltykisses.blogspot.com">http://sweetsaltykisses.blogspot.com</a>

I will say the biggest issue has been finding that balance between freaking out/over protecting and being aware and reasonable in decision making. CF families make weighty decisions on topics that other families don't think twice about (social gatherings, church attendance, swimming in the lake, proper cleaning {church nurseries/day care}, sleepovers, awareness of bacteria!). So, that in and of itself, brings a whole range of issues to the forefront.

I agree with a couple of posts above regarding other people having colds. I have found that no matter how politely you request someone letting you know of an illness, they don't. I have only one friend that really considers this when thinking of interacting with our family. It's difficult to explain that a cold is not "just a cold" for us. However, I found this true before we had our child with CF. Because we have a large family ~ five children in all. A cold has NEVER been "just a cold"! It takes weeks to run through all seven of us!

Regarding school, we home school. We always have. This gives us more flexibility with our schedules. I am thankful that we are a home school family. It has made adjusting to life with CF easier, I think, overall. However, it did takes some juggling of our schedule/morning routine to get the treatments done and school started at a reasonable time. Most mornings we start by 9:00 and school until 1:00 ~ some mornings earlier.

Our little CFer has just gotten well after having a cold/flu thing (we all have ~ only one of us escaped it). He ended up on 14 days of antibiotics and we stepped up treatments from two times a day to three. This was the first time we had increased treatments because of illness. It was also the first time that an illness settled more into his lungs than into his sinuses. It was a bit disconcerting, that rattling, chesty, juicy cough.

Hope this helps. Please feel free to visit the blog!

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