MicheleGazelle
New member
When my son wcf was little and didn't have a diagnosis, yes, I got treated like a 'neurotic, overprotective mother'.
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family opinions????
- Thread starter crickit715
- Start date
MicheleGazelle
New member
When my son wcf was little and didn't have a diagnosis, yes, I got treated like a 'neurotic, overprotective mother'.
MicheleGazelle
New member
When my son wcf was little and didn't have a diagnosis, yes, I got treated like a 'neurotic, overprotective mother'.
MicheleGazelle
New member
When my son wcf was little and didn't have a diagnosis, yes, I got treated like a 'neurotic, overprotective mother'.
MicheleGazelle
New member
When my son wcf was little and didn't have a diagnosis, yes, I got treated like a 'neurotic, overprotective mother'.
I think sometimes these responses are from ignorance, and sometimes they are a form of denial.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
I think sometimes these responses are from ignorance, and sometimes they are a form of denial.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
I think sometimes these responses are from ignorance, and sometimes they are a form of denial.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
I think sometimes these responses are from ignorance, and sometimes they are a form of denial.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
I think sometimes these responses are from ignorance, and sometimes they are a form of denial.
<br />
<br />My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
<br />
<br />My husband's sister is in complete denial about our children's diagnosis (she has refused to even get her kids tested to see if they are carriers). We have had several issues where she will show up for a holiday stay with the grandparents, and not even tell us that her kids have just been to the doctor for bronchitis. After the last time this happened, which resulted in our youngest getting pneumonia, we have stopped visiting them. It is sad; we no longer get to see our nieces on that side of the family, although we are on friendly terms with them. It took a long time to get over the anger I felt at her complete lack of concern for her only nieces, especially when I compare it with how my brothers and their families have responded. But in time I decided that she was just unable to accept that the disease is in her family. To modify her own behavior because of CF was to accept how serious the disease is, and I just don't think she can or will ever do that.
Laura
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
Laura
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
Laura
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
Laura
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
Fran
Laura
<br />
<br />I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
<br />
<br />Fran
<br />
<br />I don't think it's such a problem that cousins are not tested for carrier status, so long as they know that it's a possiblity and can be tested when they're adults. My two children w/o cf have not had their carrier status tested but are aware that they can have it done whenever they choose to. Our cf doctor feels it should be something they decide for themselves.
<br />
<br />Fran
LisaGreene
New member
This is a great thread. I agree with everything that has been said- we have had struggles with so many of the same issues over the years. Our kids are older now, 8 and 10, so it is getting better because they can take care of themselves like using handwash or staying away from sick kids.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
LisaGreene
New member
This is a great thread. I agree with everything that has been said- we have had struggles with so many of the same issues over the years. Our kids are older now, 8 and 10, so it is getting better because they can take care of themselves like using handwash or staying away from sick kids.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
LisaGreene
New member
This is a great thread. I agree with everything that has been said- we have had struggles with so many of the same issues over the years. Our kids are older now, 8 and 10, so it is getting better because they can take care of themselves like using handwash or staying away from sick kids.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
LisaGreene
New member
This is a great thread. I agree with everything that has been said- we have had struggles with so many of the same issues over the years. Our kids are older now, 8 and 10, so it is getting better because they can take care of themselves like using handwash or staying away from sick kids.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
Take care,
Lisa G.
No More No!
By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
. "Yes! Just as soon as ..."
. "Absolutely! Right after..."
. "Yes! And..."
. "Sure! As long as ..."
. "Great idea! But first..."
. "Yes, if..."
Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
Jason was so happy to have choices that he stopped arguing about taking his medication.
We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
LisaGreene
New member
This is a great thread. I agree with everything that has been said- we have had struggles with so many of the same issues over the years. Our kids are older now, 8 and 10, so it is getting better because they can take care of themselves like using handwash or staying away from sick kids.
<br />
<br />When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
<br />
<br />Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
<br />
<br />Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
<br />
<br />And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
<br />
<br />The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
<br />
<br />This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
<br />
<br />Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
<br />
<br />Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
<br />Take care,
<br />Lisa G.
<br />
<br />No More No!
<br />By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
<br />
<br />Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
<br />
<br />When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
<br />
<br />Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
<br />
<br />Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
<br />
<br />We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
<br />
<br />Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
<br />
<br />So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
<br />. "Yes! Just as soon as ..."
<br />. "Absolutely! Right after..."
<br />. "Yes! And..."
<br />. "Sure! As long as ..."
<br />. "Great idea! But first..."
<br />. "Yes, if..."
<br />
<br />Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
<br />
<br />Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
<br />
<br />So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
<br />
<br />Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
<br />
<br />Jason was so happy to have choices that he stopped arguing about taking his medication.
<br />
<br />We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
<br />
<br />
<br />
<br />
<br />When kids with CF are little, we <i>have</i> to be over-protective in order to keep them safe (despite what aunts, teachers, etc. may say). The BIG problem is though, that if we don't start letting go as they get older- as in when they go into elementary school- we will be facing <i>massive</i> problems in the teen years.
<br />
<br />Teenagers cannot handle over-protection- they rebel against it which means they "rebel" against CF which translates into refusal to take proper care of themselves. It can become a horrible battle and too many teenagers lose lung function due to rebellious non-compliance (ask any seasoned CF practitioner and they will tell you the horror stories of dealing with rebellious CF teens). Many CF adults can share their own stories of teen rebellion. <i>It's so common, it's expected. And it doesn't have to be!!</i> Alot of it stems from over-protection.
<br />
<br />Another danger of over-protection is that it "prevents" our kids from learning how to think on their own. If mom or dad do all of their thinking for them, then they don't have to and they won't. So they don't take responsibility for their own healthcare choices which translates, again, into non-compliance.
<br />
<br />And yet another danger is that it gives kids the unspoken message: "You can't cope. You are not capable of handling this so I have to do it for you." Which impacts their self-esteem in a negative way. Which can lead to hopelessness and depression.
<br />
<br />The key is to start letting go little by little and turn over the responsibility to them more and more so that by the time they are 13 or 14, they are making wise decisions for themselves- not because we tell them to or nag them to death. <i>We need to treat our kids, as much as possible, as a kid first and not as a disease. </i>
<br />
<br />This is a huge issue with kids with CF. We have <i>so many</i> articles about this. I have included one after this note that Dr. Cline and I just recently finished for our "Winning with CF" class workbook. Also, here is a link to one which has been translated into many languages now. Its called Finding Nemo, Finding a Hero and is on my website under articles at: www.happyheartfamilies.com.
<br />
<br />Please don't hear that I am being critical of you being over-protective. I know we have to be- I was very over-protective when they were little and still frequently "battle myself" over this issue. <i>But I also know that there is real danger in not knowing when to make the transition and most special needs parents make it way too late </i>(very common problem no matter what the diagnosis is). It doesn't start in the teen years, it starts at age 5. Actually, it starts when kids are old enough to throw peas off the high chair but that's another conversation... ;-)
<br />
<br />Hang in there and don't let those critics make you feel guilty! Just be sure to have a plan for letting go... Sorry this is so long but it's my hot button and it's so <i>very, very, very </i>important. That's why I am so passionate about educating families in the CF community about this issue. It can save lives.....
<br />Take care,
<br />Lisa G.
<br />
<br />No More No!
<br />By the time Jason was three, he had heard the word 'No!' about 15,000 times! And, according to some research, that number is low. So when Jason's mom said, "It's time to take your medicine," what do you think he said? You guessed it! The problem is, this wasn't just your typical toddler control battle. Jason needs his medication to stay alive because he has cystic fibrosis.
<br />
<br />Jason's mom, unknowingly, had trained him to say 'no.' In fact, she trained him really well! Of course, there are times when parents need to set limits and just say no or children will become spoiled. However, too many "no's" will eventually cause the relationship to suffer. When children are young, the word 'no' brings on power struggles in the form of arguing, whining and tantrums.
<br />
<br />When children are older, too many no's can result in outright rebellion, deception or simply giving up. This can present itself as non-compliance with medical requirements as well as other risky behaviors like drug or alcohol use.
<br />
<br />Telling an otherwise healthy child or teen with CF (moderate to mild lung involvement) that they "can't" do something because they have CF is the number one way to promote rebellion or depression down the road especially if it's a typical childhood activity like swimming, playing outside, going on play dates, visiting the playground, etc.
<br />
<br />Obviously, things are different if your child has severe complications from CF but even then, wise parents say yes as often as possible with a positive, can-do attitude.
<br />
<br />We are not saying this is easy, but you have to be able to let go and encourage them to push their own boundaries and find out for themselves what they can and can't do. For example, you should be worried about whether they are dressed well enough to go play outside in the snow- not wondering if they should be playing out in the snow.
<br />
<br />Look into your children's future. What do you want for them? They won't be kids forever, and if you want them to do things like go to college, have a career, and a family of their own, you have to start telling them YES YOU CAN now. This is how we raise kids who believe in themselves.
<br />
<br />So learn how to say Yes Instead of No. Parents can still set limits and say 'Yes!' by using the following phrases:
<br />. "Yes! Just as soon as ..."
<br />. "Absolutely! Right after..."
<br />. "Yes! And..."
<br />. "Sure! As long as ..."
<br />. "Great idea! But first..."
<br />. "Yes, if..."
<br />
<br />Here's how it sounds: "Mom, can I have some cookies?" "Yes! Just as soon as you finish eating your dinner." Put the emphasis on the word "Yes!" with great enthusiasm and big smiles. It helps to pause for just a moment right after the 'Yes!'
<br />
<br />Here's one for teens: "Mom, can I borrow the car to go over to Bill's house?" "Sure! Right after you've done your breathing treatments."
<br />
<br />So what about little Jason? His mom learned how to set limits without saying 'no' by saying 'Yes!' instead. When Jason asked, "Can we go to the park?" she said, "Absolutely! Let's go right after your breathing treatments are done." And they did.
<br />
<br />Jason's mom also learned to use choices. This is especially important when kids have healthcare issues and other special needs. She used lots of little choices as much as possible like "Would you like to do your breathing treatments now or after playtime?" or "Would you like your medicine with apple juice or chocolate milk?"
<br />
<br />Jason was so happy to have choices that he stopped arguing about taking his medication.
<br />
<br />We are happy to report that Jason is enjoying good health and a great relationship with his dear mom.
<br />
<br />
<br />