Discipline and the CF child

Mommafirst · Apr 9, 2009

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first.

Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

Mommafirst · Apr 9, 2009

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first.

Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

Mommafirst · Apr 9, 2009

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first.

Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

Mommafirst · Apr 9, 2009

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first.

Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

Mommafirst · Apr 9, 2009

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.
 
 I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first.
 
 Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.
 
 Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.
 
 But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.
 
 I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

JazzysMom · Apr 9, 2009

This must be a challenge for many familys that have more children then the CFer.

Its important that she know the ONLY reason she is allowed to pick the tv shows or eat ice cream without having finished dinner is to keep her healthy. I would refrain from saying "because she has CF". IMHO that statement would give her too much power & she would probably use it inappropriately.

Its so easy for one to give advice, but coming from the baby of the family. The only one with CF & the most spoiled. Its ok to be "harsh". CF doesnt allow a child to be rude, mean or just not fun to be around.

It sounds like you have the idea of where to start. She will keep pushing your buttons if you are not strong & dont stick to JUST the CF routine where she is allowed that leeway.

Good Luck & I am sure other Moms who actually have experience will chime in!!

JazzysMom · Apr 9, 2009

This must be a challenge for many familys that have more children then the CFer.

Its important that she know the ONLY reason she is allowed to pick the tv shows or eat ice cream without having finished dinner is to keep her healthy. I would refrain from saying "because she has CF". IMHO that statement would give her too much power & she would probably use it inappropriately.

Its so easy for one to give advice, but coming from the baby of the family. The only one with CF & the most spoiled. Its ok to be "harsh". CF doesnt allow a child to be rude, mean or just not fun to be around.

It sounds like you have the idea of where to start. She will keep pushing your buttons if you are not strong & dont stick to JUST the CF routine where she is allowed that leeway.

Good Luck & I am sure other Moms who actually have experience will chime in!!

JazzysMom · Apr 9, 2009

This must be a challenge for many familys that have more children then the CFer.

Its important that she know the ONLY reason she is allowed to pick the tv shows or eat ice cream without having finished dinner is to keep her healthy. I would refrain from saying "because she has CF". IMHO that statement would give her too much power & she would probably use it inappropriately.

Its so easy for one to give advice, but coming from the baby of the family. The only one with CF & the most spoiled. Its ok to be "harsh". CF doesnt allow a child to be rude, mean or just not fun to be around.

It sounds like you have the idea of where to start. She will keep pushing your buttons if you are not strong & dont stick to JUST the CF routine where she is allowed that leeway.

Good Luck & I am sure other Moms who actually have experience will chime in!!

JazzysMom · Apr 9, 2009

This must be a challenge for many familys that have more children then the CFer.

Its important that she know the ONLY reason she is allowed to pick the tv shows or eat ice cream without having finished dinner is to keep her healthy. I would refrain from saying "because she has CF". IMHO that statement would give her too much power & she would probably use it inappropriately.

Its so easy for one to give advice, but coming from the baby of the family. The only one with CF & the most spoiled. Its ok to be "harsh". CF doesnt allow a child to be rude, mean or just not fun to be around.

It sounds like you have the idea of where to start. She will keep pushing your buttons if you are not strong & dont stick to JUST the CF routine where she is allowed that leeway.

Good Luck & I am sure other Moms who actually have experience will chime in!!

JazzysMom · Apr 9, 2009

This must be a challenge for many familys that have more children then the CFer.
 
 Its important that she know the ONLY reason she is allowed to pick the tv shows or eat ice cream without having finished dinner is to keep her healthy. I would refrain from saying "because she has CF". IMHO that statement would give her too much power & she would probably use it inappropriately.
 
 Its so easy for one to give advice, but coming from the baby of the family. The only one with CF & the most spoiled. Its ok to be "harsh". CF doesnt allow a child to be rude, mean or just not fun to be around.
 
 It sounds like you have the idea of where to start. She will keep pushing your buttons if you are not strong & dont stick to JUST the CF routine where she is allowed that leeway.
 
 Good Luck & I am sure other Moms who actually have experience will chime in!!

valigirl21 · Apr 9, 2009

I hate to sound like a Negative Nelly, but if you get any answers I'd LOVE to hear them, too. My CFer is almost 10 and my daughter is 13, and she still throws a fit b/c Noah has different rules than she does. The best I can offer is to balance out the slides for your CFer (different food, t.v. time, etc) with privledges for the older ones that Alyssa doesn't get. My daughter and I have a Mommy/ daughter day w/o Noah, and, of course, she has a later bedtime that we use to talk, or watch shows that aren't appropriate for Noah. You just have to find things that work for the ages of you're kiddos.

As for the discipline thing, I only have one insight: keep up what you've been doing. As a former preschool teacher I can confidently say that preschool-aged girls are hard! Your daughter doesn't actually seem as bad as my daughter was. Its a joke among preschool teachers that 3 year old girls are the most trying children on earth. Its at this time they begin to understand how to control people around them, and it sounds like Alyssa just wants to control SOMETHING in her life. Can you really blame her?

I know that this isn't much help, but keep in mind that she will grow out of it (hopefully, eventually).

Until then...(((HUGS))) from one mom to another!

valigirl21 · Apr 9, 2009

I hate to sound like a Negative Nelly, but if you get any answers I'd LOVE to hear them, too. My CFer is almost 10 and my daughter is 13, and she still throws a fit b/c Noah has different rules than she does. The best I can offer is to balance out the slides for your CFer (different food, t.v. time, etc) with privledges for the older ones that Alyssa doesn't get. My daughter and I have a Mommy/ daughter day w/o Noah, and, of course, she has a later bedtime that we use to talk, or watch shows that aren't appropriate for Noah. You just have to find things that work for the ages of you're kiddos.

As for the discipline thing, I only have one insight: keep up what you've been doing. As a former preschool teacher I can confidently say that preschool-aged girls are hard! Your daughter doesn't actually seem as bad as my daughter was. Its a joke among preschool teachers that 3 year old girls are the most trying children on earth. Its at this time they begin to understand how to control people around them, and it sounds like Alyssa just wants to control SOMETHING in her life. Can you really blame her?

I know that this isn't much help, but keep in mind that she will grow out of it (hopefully, eventually).

Until then...(((HUGS))) from one mom to another!

valigirl21 · Apr 9, 2009

I hate to sound like a Negative Nelly, but if you get any answers I'd LOVE to hear them, too. My CFer is almost 10 and my daughter is 13, and she still throws a fit b/c Noah has different rules than she does. The best I can offer is to balance out the slides for your CFer (different food, t.v. time, etc) with privledges for the older ones that Alyssa doesn't get. My daughter and I have a Mommy/ daughter day w/o Noah, and, of course, she has a later bedtime that we use to talk, or watch shows that aren't appropriate for Noah. You just have to find things that work for the ages of you're kiddos.

As for the discipline thing, I only have one insight: keep up what you've been doing. As a former preschool teacher I can confidently say that preschool-aged girls are hard! Your daughter doesn't actually seem as bad as my daughter was. Its a joke among preschool teachers that 3 year old girls are the most trying children on earth. Its at this time they begin to understand how to control people around them, and it sounds like Alyssa just wants to control SOMETHING in her life. Can you really blame her?

I know that this isn't much help, but keep in mind that she will grow out of it (hopefully, eventually).

Until then...(((HUGS))) from one mom to another!

valigirl21 · Apr 9, 2009

I hate to sound like a Negative Nelly, but if you get any answers I'd LOVE to hear them, too. My CFer is almost 10 and my daughter is 13, and she still throws a fit b/c Noah has different rules than she does. The best I can offer is to balance out the slides for your CFer (different food, t.v. time, etc) with privledges for the older ones that Alyssa doesn't get. My daughter and I have a Mommy/ daughter day w/o Noah, and, of course, she has a later bedtime that we use to talk, or watch shows that aren't appropriate for Noah. You just have to find things that work for the ages of you're kiddos.

As for the discipline thing, I only have one insight: keep up what you've been doing. As a former preschool teacher I can confidently say that preschool-aged girls are hard! Your daughter doesn't actually seem as bad as my daughter was. Its a joke among preschool teachers that 3 year old girls are the most trying children on earth. Its at this time they begin to understand how to control people around them, and it sounds like Alyssa just wants to control SOMETHING in her life. Can you really blame her?

I know that this isn't much help, but keep in mind that she will grow out of it (hopefully, eventually).

Until then...(((HUGS))) from one mom to another!

valigirl21 · Apr 9, 2009

I hate to sound like a Negative Nelly, but if you get any answers I'd LOVE to hear them, too. My CFer is almost 10 and my daughter is 13, and she still throws a fit b/c Noah has different rules than she does. The best I can offer is to balance out the slides for your CFer (different food, t.v. time, etc) with privledges for the older ones that Alyssa doesn't get. My daughter and I have a Mommy/ daughter day w/o Noah, and, of course, she has a later bedtime that we use to talk, or watch shows that aren't appropriate for Noah. You just have to find things that work for the ages of you're kiddos.
 
 As for the discipline thing, I only have one insight: keep up what you've been doing. As a former preschool teacher I can confidently say that preschool-aged girls are hard! Your daughter doesn't actually seem as bad as my daughter was. Its a joke among preschool teachers that 3 year old girls are the most trying children on earth. Its at this time they begin to understand how to control people around them, and it sounds like Alyssa just wants to control SOMETHING in her life. Can you really blame her?
 
 I know that this isn't much help, but keep in mind that she will grow out of it (hopefully, eventually).
 
 Until then...(((HUGS))) from one mom to another!

Rebjane · Apr 9, 2009

I don't know if I have any great advice for you; just know you are not alone. My son without CF is 10 1/2 years old and there are rules that apply to Maggie and not to him. Basically; Life with CF is not Fair and I can not make things equal between them. For example, Maggie gets an endless supply of whole milk; she can have as many glasses as she wants. My son loves milk but he gets his one glass of skim milk at dinner then he can have water. I tell him because of her CF she can't absorb the fat; that's why she needs more(Hoepfully I'm not damaging my son's self image) We have a similar deal with the VEST and TV. I think if Maggie has to sit and get jiggled around til she feels nauseas she should be albe to watch whatever show she wants on TV. Sammy accepts that. The hitting thing I would not put up with. Maggie, is older than your daughter, Maggie also had a VERY easy going personality but if she hits, talks back, she will get sent to her room for a good cry. My kids also tend to act up when they are tired or coming down with something. Sammy has said to me "Maggie gets whatever she wants; she's spoiled". I likely am easier on Maggie cause she has so much stuff to do every day just to get to school; there is no way we'lf get out of the house if I fought her on everything. That being said; I point out to Sammy he is fortunate not to have CF; no nebs , no treatments, no enzymes. It's really hard. Just remember Life is not fair and I don't think we can make it equal. We just do the best we can

Rebjane · Apr 9, 2009

I don't know if I have any great advice for you; just know you are not alone. My son without CF is 10 1/2 years old and there are rules that apply to Maggie and not to him. Basically; Life with CF is not Fair and I can not make things equal between them. For example, Maggie gets an endless supply of whole milk; she can have as many glasses as she wants. My son loves milk but he gets his one glass of skim milk at dinner then he can have water. I tell him because of her CF she can't absorb the fat; that's why she needs more(Hoepfully I'm not damaging my son's self image) We have a similar deal with the VEST and TV. I think if Maggie has to sit and get jiggled around til she feels nauseas she should be albe to watch whatever show she wants on TV. Sammy accepts that. The hitting thing I would not put up with. Maggie, is older than your daughter, Maggie also had a VERY easy going personality but if she hits, talks back, she will get sent to her room for a good cry. My kids also tend to act up when they are tired or coming down with something. Sammy has said to me "Maggie gets whatever she wants; she's spoiled". I likely am easier on Maggie cause she has so much stuff to do every day just to get to school; there is no way we'lf get out of the house if I fought her on everything. That being said; I point out to Sammy he is fortunate not to have CF; no nebs , no treatments, no enzymes. It's really hard. Just remember Life is not fair and I don't think we can make it equal. We just do the best we can

Rebjane · Apr 9, 2009

I don't know if I have any great advice for you; just know you are not alone. My son without CF is 10 1/2 years old and there are rules that apply to Maggie and not to him. Basically; Life with CF is not Fair and I can not make things equal between them. For example, Maggie gets an endless supply of whole milk; she can have as many glasses as she wants. My son loves milk but he gets his one glass of skim milk at dinner then he can have water. I tell him because of her CF she can't absorb the fat; that's why she needs more(Hoepfully I'm not damaging my son's self image) We have a similar deal with the VEST and TV. I think if Maggie has to sit and get jiggled around til she feels nauseas she should be albe to watch whatever show she wants on TV. Sammy accepts that. The hitting thing I would not put up with. Maggie, is older than your daughter, Maggie also had a VERY easy going personality but if she hits, talks back, she will get sent to her room for a good cry. My kids also tend to act up when they are tired or coming down with something. Sammy has said to me "Maggie gets whatever she wants; she's spoiled". I likely am easier on Maggie cause she has so much stuff to do every day just to get to school; there is no way we'lf get out of the house if I fought her on everything. That being said; I point out to Sammy he is fortunate not to have CF; no nebs , no treatments, no enzymes. It's really hard. Just remember Life is not fair and I don't think we can make it equal. We just do the best we can

Rebjane · Apr 9, 2009

I don't know if I have any great advice for you; just know you are not alone. My son without CF is 10 1/2 years old and there are rules that apply to Maggie and not to him. Basically; Life with CF is not Fair and I can not make things equal between them. For example, Maggie gets an endless supply of whole milk; she can have as many glasses as she wants. My son loves milk but he gets his one glass of skim milk at dinner then he can have water. I tell him because of her CF she can't absorb the fat; that's why she needs more(Hoepfully I'm not damaging my son's self image) We have a similar deal with the VEST and TV. I think if Maggie has to sit and get jiggled around til she feels nauseas she should be albe to watch whatever show she wants on TV. Sammy accepts that. The hitting thing I would not put up with. Maggie, is older than your daughter, Maggie also had a VERY easy going personality but if she hits, talks back, she will get sent to her room for a good cry. My kids also tend to act up when they are tired or coming down with something. Sammy has said to me "Maggie gets whatever she wants; she's spoiled". I likely am easier on Maggie cause she has so much stuff to do every day just to get to school; there is no way we'lf get out of the house if I fought her on everything. That being said; I point out to Sammy he is fortunate not to have CF; no nebs , no treatments, no enzymes. It's really hard. Just remember Life is not fair and I don't think we can make it equal. We just do the best we can

Rebjane · Apr 9, 2009

I don't know if I have any great advice for you; just know you are not alone. My son without CF is 10 1/2 years old and there are rules that apply to Maggie and not to him. Basically; Life with CF is not Fair and I can not make things equal between them. For example, Maggie gets an endless supply of whole milk; she can have as many glasses as she wants. My son loves milk but he gets his one glass of skim milk at dinner then he can have water. I tell him because of her CF she can't absorb the fat; that's why she needs more(Hoepfully I'm not damaging my son's self image) We have a similar deal with the VEST and TV. I think if Maggie has to sit and get jiggled around til she feels nauseas she should be albe to watch whatever show she wants on TV. Sammy accepts that. The hitting thing I would not put up with. Maggie, is older than your daughter, Maggie also had a VERY easy going personality but if she hits, talks back, she will get sent to her room for a good cry. My kids also tend to act up when they are tired or coming down with something. Sammy has said to me "Maggie gets whatever she wants; she's spoiled". I likely am easier on Maggie cause she has so much stuff to do every day just to get to school; there is no way we'lf get out of the house if I fought her on everything. That being said; I point out to Sammy he is fortunate not to have CF; no nebs , no treatments, no enzymes. It's really hard. Just remember Life is not fair and I don't think we can make it equal. We just do the best we can

Discipline and the CF child

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