How do you help them cope?

LisaGreene

New member
Hi Heather,
There are already so many good ideas from other parents and you are doing alot right! I love how you were silly with your daughter- humor goes such a long ways. So my post isn't just for you but to all of us in general- including myself (as a mom of 2 kids with CF who is also feeling like CF stinks right now!) ;-)

So- the reality is: CF stinks! And, if we feel that way as parents, it only makes sense that our kids will feel that way, too.

But the way that we respond to our kids in these moments can make a huge difference whether they will come to see themselves as victims of CF or as victors over it.

We all know adults with serious illnesses (including CF) that fall into both sides of the camp- whiners vs. winners. Not to say that we shouldn't whine at times- we all do and certainly deserve to! However, is it the predominant style of coping or just a short, well-needed venting?

The danger is that we, as parents, by our responses, can end up (unintentionally of course) encouraging a victim life stance. There are payoffs in whining and playing the victim: lots of sympathy, people hustling around to make things better, getting out of something distasteful or difficult (like a GI tube), power, control, shows of emotion, attention, etc.

So we, as parents, don't want to respond in ways that give our kids "payoffs" for being a victim. Instead, we want to give them positives for being a victor.

So, the key with our CF kids who are whining about CF or breathing treatments or anything else for that matter (including homework!) is to be empathetic and understanding but not validate the CONTENT of the complaint and bring our kids into the "thinking state."

I have written a whole book about this issue (<i>Parenting Children with Health Issues</i> by Cline/Greene on amazon) so I can't give you a thorough answer in just a short note. But here are some links to good video, audio, etc. which will help give you the communication tools to deal with this effectively.

<b>Free video presentation of "Winning with CF" at AR Children's Hospital Family Ed Day: </b> <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/WinCFVideo.html">http://www.happyheartfamilies....ax.com/WinCFVideo.html</a>

<b>Free audio download of Top Do's and Don'ts for Raising Kids with Health Issues</b> at Cystic Fibrosis Research Inc conference): <a target=_blank class=ftalternatingbarlinklarge href="http://www.parentingchildrenwithhealthissues.com/AudioDownload.html">http://www.parentingchildrenwi...com/AudioDownload.html</a>

A big piece of this is making sure our kids know the all of the possible consequences for their non-adherence. They can't make good decisions without knowing the truth. Of course how we present that truth is important and here are some <b>articles on how to talk about difficult issues </b>with our CF kids: <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/CFChildCommunication.html">http://www.happyheartfamilies....hildCommunication.html</a>

Hang in there!! You can do it...
Hugs,
Lisa
 

LisaGreene

New member
Hi Heather,
<br />There are already so many good ideas from other parents and you are doing alot right! I love how you were silly with your daughter- humor goes such a long ways. So my post isn't just for you but to all of us in general- including myself (as a mom of 2 kids with CF who is also feeling like CF stinks right now!) ;-)
<br />
<br />So- the reality is: CF stinks! And, if we feel that way as parents, it only makes sense that our kids will feel that way, too.
<br />
<br />But the way that we respond to our kids in these moments can make a huge difference whether they will come to see themselves as victims of CF or as victors over it.
<br />
<br />We all know adults with serious illnesses (including CF) that fall into both sides of the camp- whiners vs. winners. Not to say that we shouldn't whine at times- we all do and certainly deserve to! However, is it the predominant style of coping or just a short, well-needed venting?
<br />
<br />The danger is that we, as parents, by our responses, can end up (unintentionally of course) encouraging a victim life stance. There are payoffs in whining and playing the victim: lots of sympathy, people hustling around to make things better, getting out of something distasteful or difficult (like a GI tube), power, control, shows of emotion, attention, etc.
<br />
<br />So we, as parents, don't want to respond in ways that give our kids "payoffs" for being a victim. Instead, we want to give them positives for being a victor.
<br />
<br />So, the key with our CF kids who are whining about CF or breathing treatments or anything else for that matter (including homework!) is to be empathetic and understanding but not validate the CONTENT of the complaint and bring our kids into the "thinking state."
<br />
<br />I have written a whole book about this issue (<i>Parenting Children with Health Issues</i> by Cline/Greene on amazon) so I can't give you a thorough answer in just a short note. But here are some links to good video, audio, etc. which will help give you the communication tools to deal with this effectively.
<br />
<br /><b>Free video presentation of "Winning with CF" at AR Children's Hospital Family Ed Day: </b> <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/WinCFVideo.html">http://www.happyheartfamilies....ax.com/WinCFVideo.html</a>
<br />
<br /><b>Free audio download of Top Do's and Don'ts for Raising Kids with Health Issues</b> at Cystic Fibrosis Research Inc conference): <a target=_blank class=ftalternatingbarlinklarge href="http://www.parentingchildrenwithhealthissues.com/AudioDownload.html">http://www.parentingchildrenwi...com/AudioDownload.html</a>
<br />
<br />A big piece of this is making sure our kids know the all of the possible consequences for their non-adherence. They can't make good decisions without knowing the truth. Of course how we present that truth is important and here are some <b>articles on how to talk about difficult issues </b>with our CF kids: <a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.citymax.com/CFChildCommunication.html">http://www.happyheartfamilies....hildCommunication.html</a>
<br />
<br />Hang in there!! You can do it...
<br />Hugs,
<br />Lisa
<br />
<br />
 
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