Parents Perspective

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!

Wingnatic · Mar 30, 2011

One of the early challenges we faced as parents was school . Not my son's studies , but the people who ran the schools . Teachers who just could not grasp my sons condition even though time after time providing them with pamphlets on CF , specifically the need to use the bathroom more than most at a minutes notice . Their solution (middle school) is to make a hall pass (special one) that hung around his neck . What ! You idiots ! Why not just make all his teachers aware (we already did this ) of his condition and make all the hall monitors aware as well ( we did this also ) This way he could quietly dismiss himself and nobody would question him saving him the embarassment . We solved that by telling school officials he doesn't need a hall pass and could leave anytime he needs to and that was the end of that .

Also a question of his enzymes , enhaler . Most school policies say you have to leave a kids drugs in the nurses or school office and they will give it to them when they need it . Well most lunch hours (very short ones ) the school nurse was at lunch herself and so were any office personnal with authority to give him his enzymes . Our solution was take your school policies and ...........

Now on to high school . Here in Michigan its required to have 1 semester of Phys Ed to graduate . Thats fine , most kids can do that no problem .... except kids with a lung disease maybe ? My sons brilliant swim coach wanted to fail my son because he was contantly out of breath . Enter the school board meeting where the swim teacher was insistant on failing my son . I looked her square in the eyes and yelled '' what the hell don't you understand about my sons lung disease ?''
Sophmore year final exams:
My son got sick enough for a hospital stay to insert a PICC line , adjust his IV antibiotics before sending him home for weeks of therapy . Missed his final exams , a couple of weeks later recieved a letter from the school district that he failed his Sophmore year by missing his final exams even though he did well all year . What ! Another meeting with the school board .
I don't know about other States but michigan has a law pertaining to things like this (Section ? I forgot now) where they have to grade situations like this on what has been done up to that point in class .
Moral of the story is that we have options , be your own or your CF kids advocate ,some people are ignorant to CF , some CF'ers look fine on the outside and may cause some doubt like my case with the swim coach .

Wingnatic · Mar 30, 2011

One of the early challenges we faced as parents was school . Not my son's studies , but the people who ran the schools . Teachers who just could not grasp my sons condition even though time after time providing them with pamphlets on CF , specifically the need to use the bathroom more than most at a minutes notice . Their solution (middle school) is to make a hall pass (special one) that hung around his neck . What ! You idiots ! Why not just make all his teachers aware (we already did this ) of his condition and make all the hall monitors aware as well ( we did this also ) This way he could quietly dismiss himself and nobody would question him saving him the embarassment . We solved that by telling school officials he doesn't need a hall pass and could leave anytime he needs to and that was the end of that .

Also a question of his enzymes , enhaler . Most school policies say you have to leave a kids drugs in the nurses or school office and they will give it to them when they need it . Well most lunch hours (very short ones ) the school nurse was at lunch herself and so were any office personnal with authority to give him his enzymes . Our solution was take your school policies and ...........

Now on to high school . Here in Michigan its required to have 1 semester of Phys Ed to graduate . Thats fine , most kids can do that no problem .... except kids with a lung disease maybe ? My sons brilliant swim coach wanted to fail my son because he was contantly out of breath . Enter the school board meeting where the swim teacher was insistant on failing my son . I looked her square in the eyes and yelled '' what the hell don't you understand about my sons lung disease ?''
Sophmore year final exams:
My son got sick enough for a hospital stay to insert a PICC line , adjust his IV antibiotics before sending him home for weeks of therapy . Missed his final exams , a couple of weeks later recieved a letter from the school district that he failed his Sophmore year by missing his final exams even though he did well all year . What ! Another meeting with the school board .
I don't know about other States but michigan has a law pertaining to things like this (Section ? I forgot now) where they have to grade situations like this on what has been done up to that point in class .
Moral of the story is that we have options , be your own or your CF kids advocate ,some people are ignorant to CF , some CF'ers look fine on the outside and may cause some doubt like my case with the swim coach .

Wingnatic · Mar 30, 2011

One of the early challenges we faced as parents was school . Not my son's studies , but the people who ran the schools . Teachers who just could not grasp my sons condition even though time after time providing them with pamphlets on CF , specifically the need to use the bathroom more than most at a minutes notice . Their solution (middle school) is to make a hall pass (special one) that hung around his neck . What ! You idiots ! Why not just make all his teachers aware (we already did this ) of his condition and make all the hall monitors aware as well ( we did this also ) This way he could quietly dismiss himself and nobody would question him saving him the embarassment . We solved that by telling school officials he doesn't need a hall pass and could leave anytime he needs to and that was the end of that .
 
 Also a question of his enzymes , enhaler . Most school policies say you have to leave a kids drugs in the nurses or school office and they will give it to them when they need it . Well most lunch hours (very short ones ) the school nurse was at lunch herself and so were any office personnal with authority to give him his enzymes . Our solution was take your school policies and ...........
 
 Now on to high school . Here in Michigan its required to have 1 semester of Phys Ed to graduate . Thats fine , most kids can do that no problem .... except kids with a lung disease maybe ? My sons brilliant swim coach wanted to fail my son because he was contantly out of breath . Enter the school board meeting where the swim teacher was insistant on failing my son . I looked her square in the eyes and yelled '' what the hell don't you understand about my sons lung disease ?''
 Sophmore year final exams:
 My son got sick enough for a hospital stay to insert a PICC line , adjust his IV antibiotics before sending him home for weeks of therapy . Missed his final exams , a couple of weeks later recieved a letter from the school district that he failed his Sophmore year by missing his final exams even though he did well all year . What ! Another meeting with the school board .
 I don't know about other States but michigan has a law pertaining to things like this (Section ? I forgot now) where they have to grade situations like this on what has been done up to that point in class .
 Moral of the story is that we have options , be your own or your CF kids advocate ,some people are ignorant to CF , some CF'ers look fine on the outside and may cause some doubt like my case with the swim coach .

hmw · Mar 30, 2011

Emily is a special education student and has been since the age of three; a neurological condition left her with developmental disabilities. She is now in 4th grade, is academically on about a 1st-2nd grade level with speech/auditory processing disabilities a bit more extensive than that. She was diagnosed with CF about 2.5yrs ago, at the age of 7.

Given her age of dx, there was a definite 'before cf' and 'after cf' in our family life and a HUGE learning curve and adjustment to the changes this disease brought into our lives. It was a challenge helping the boys cope with the dx as well and to be honest it's still a work in progress.

Yes, a lot had to change. It already was a production getting 3 kids (then 7, 9 and 11 and attending 3 different schools) out the door for school in the morning, and adding a new challenge in the form of morning treatments felt like an insurmountable task at first. Then in the afternoon, there was the chaos of afterschool activities and homework and showers x3, dinner and bedtime routines- all which seemed like too much to cram into any typical night as it was... and again, we had to learn how to fit in another treatment session.

Back then it was 20min of vest with minimal inhaled medication and we were done in under half an hour, but still- quite overwhelming to add to an already very busy life. She had to get used to taking enzymes every time she ate, including at school, also a challenge. She was embarrassed if anyone she knew was in the nurses' office when she went to take them and didn't want people to know about it.

Now- 2.5yrs later. I long for 20min twice a day and one inhaled neb!! Treatments have become so much more extensive, have had to, to keep pace with the progressive nature of this disease. Her disease has taken over so much, a lot more 'center stage' than I ever wanted, but when a kid is sick so often, it's hard for it not to. Emily has missed well over 50 days of school thus far this year and if only someone would fill the post, she'd have homebound instruction for times like this. At least it's already set up for next year... Treatments now take upwards of 3hrs a day when she's sick and about 90min a day when healthy. One neb a day has become 4 different inhaled medications. Enzymes have been joined by several other oral medications.

It impacts school and education enormously, esp when you are already looking at a special needs child. A compassionate teacher is a must- a teacher who takes the extra time to LEARN about this disease. I don't want someone who will treat her like glass, but I do need someone who will take her needs seriously, who will understand just how much this disease encompasses both when they are sick and when they are well. And that no two children with cf are equal- some do incredibly well, some are extremely ill, and most, like Emily, are somewhere inbetween.

I could continue... this is such a complex issue. But since you are going into special education, I wanted to be sure I covered the educational side as much as I could. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Mar 30, 2011

Emily is a special education student and has been since the age of three; a neurological condition left her with developmental disabilities. She is now in 4th grade, is academically on about a 1st-2nd grade level with speech/auditory processing disabilities a bit more extensive than that. She was diagnosed with CF about 2.5yrs ago, at the age of 7.

Given her age of dx, there was a definite 'before cf' and 'after cf' in our family life and a HUGE learning curve and adjustment to the changes this disease brought into our lives. It was a challenge helping the boys cope with the dx as well and to be honest it's still a work in progress.

Yes, a lot had to change. It already was a production getting 3 kids (then 7, 9 and 11 and attending 3 different schools) out the door for school in the morning, and adding a new challenge in the form of morning treatments felt like an insurmountable task at first. Then in the afternoon, there was the chaos of afterschool activities and homework and showers x3, dinner and bedtime routines- all which seemed like too much to cram into any typical night as it was... and again, we had to learn how to fit in another treatment session.

Back then it was 20min of vest with minimal inhaled medication and we were done in under half an hour, but still- quite overwhelming to add to an already very busy life. She had to get used to taking enzymes every time she ate, including at school, also a challenge. She was embarrassed if anyone she knew was in the nurses' office when she went to take them and didn't want people to know about it.

Now- 2.5yrs later. I long for 20min twice a day and one inhaled neb!! Treatments have become so much more extensive, have had to, to keep pace with the progressive nature of this disease. Her disease has taken over so much, a lot more 'center stage' than I ever wanted, but when a kid is sick so often, it's hard for it not to. Emily has missed well over 50 days of school thus far this year and if only someone would fill the post, she'd have homebound instruction for times like this. At least it's already set up for next year... Treatments now take upwards of 3hrs a day when she's sick and about 90min a day when healthy. One neb a day has become 4 different inhaled medications. Enzymes have been joined by several other oral medications.

It impacts school and education enormously, esp when you are already looking at a special needs child. A compassionate teacher is a must- a teacher who takes the extra time to LEARN about this disease. I don't want someone who will treat her like glass, but I do need someone who will take her needs seriously, who will understand just how much this disease encompasses both when they are sick and when they are well. And that no two children with cf are equal- some do incredibly well, some are extremely ill, and most, like Emily, are somewhere inbetween.

I could continue... this is such a complex issue. But since you are going into special education, I wanted to be sure I covered the educational side as much as I could. <img src="i/expressions/face-icon-small-smile.gif" border="0">

hmw · Mar 30, 2011

Emily is a special education student and has been since the age of three; a neurological condition left her with developmental disabilities. She is now in 4th grade, is academically on about a 1st-2nd grade level with speech/auditory processing disabilities a bit more extensive than that. She was diagnosed with CF about 2.5yrs ago, at the age of 7.
 
 Given her age of dx, there was a definite 'before cf' and 'after cf' in our family life and a HUGE learning curve and adjustment to the changes this disease brought into our lives. It was a challenge helping the boys cope with the dx as well and to be honest it's still a work in progress.
 
 Yes, a lot had to change. It already was a production getting 3 kids (then 7, 9 and 11 and attending 3 different schools) out the door for school in the morning, and adding a new challenge in the form of morning treatments felt like an insurmountable task at first. Then in the afternoon, there was the chaos of afterschool activities and homework and showers x3, dinner and bedtime routines- all which seemed like too much to cram into any typical night as it was... and again, we had to learn how to fit in another treatment session.
 
 Back then it was 20min of vest with minimal inhaled medication and we were done in under half an hour, but still- quite overwhelming to add to an already very busy life. She had to get used to taking enzymes every time she ate, including at school, also a challenge. She was embarrassed if anyone she knew was in the nurses' office when she went to take them and didn't want people to know about it.
 
 Now- 2.5yrs later. I long for 20min twice a day and one inhaled neb!! Treatments have become so much more extensive, have had to, to keep pace with the progressive nature of this disease. Her disease has taken over so much, a lot more 'center stage' than I ever wanted, but when a kid is sick so often, it's hard for it not to. Emily has missed well over 50 days of school thus far this year and if only someone would fill the post, she'd have homebound instruction for times like this. At least it's already set up for next year... Treatments now take upwards of 3hrs a day when she's sick and about 90min a day when healthy. One neb a day has become 4 different inhaled medications. Enzymes have been joined by several other oral medications.
 
 It impacts school and education enormously, esp when you are already looking at a special needs child. A compassionate teacher is a must- a teacher who takes the extra time to LEARN about this disease. I don't want someone who will treat her like glass, but I do need someone who will take her needs seriously, who will understand just how much this disease encompasses both when they are sick and when they are well. And that no two children with cf are equal- some do incredibly well, some are extremely ill, and most, like Emily, are somewhere inbetween.
 
 I could continue... this is such a complex issue. But since you are going into special education, I wanted to be sure I covered the educational side as much as I could. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Parents Perspective

dee5

New member

Wingnatic

New member

Wingnatic

New member

Wingnatic

New member

hmw

New member

hmw

New member

hmw

New member