any good advice for parents of cfers????

[welshgirl]

do any of the adult cfers have any good advice for parents with children who are or almost are teenagers. i know there will be a time when joe will rebel<img src="i/expressions/face-icon-small-frown.gif" border="0"> he won't want to do his physio or take his meds. he will be a stroppy teenager with "extra" problems. is there anything your parents could have done, maybe ,differently (no disrespect meant to your parents<img src="i/expressions/face-icon-small-smile.gif" border="0">) to have made you more aware of the need to take better care of yourselves? a firm hand? the softly softly approach? i suppose it depends a lot on your personality type , joe being strong willed and stubborn, any advice for a child like that? thanks in advance.

 

[NoExcuses]

Janet, PM me. I will give you my mom's email address. She has some great advice on how she handled me <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> She did a great job and kept me really healthy.

 

[welshgirl]

can i do it tomorrow (hope you don't think i'm rude). we are just on the way to pitch up the scouts tent. joe is going on his first ever camping trip tomorrow, for the whole weekend. yikes!!!!!!!!!!!!!!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[NoExcuses]

of course. not rude at all. the offer stands forever <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> she's always happy to help.

 

[JazzysMom]

I dont know what to tell you except try to find the right balance. My mom/dad (moreso my Mom) could have done things better. They didnt discipline me to do my treatments & gave me a lot of freedom as a teen. I, of course, thought it was great then, but looking back I actually wish they had been more stern & disciplined. I know that my Mom was so easy going because she felt guilty & figured I didnt "have long" so let me have fun. Well as I have said before....he I am 30 + years after dx!

 

[Jane]

Hi Janet,

I asked some questions about this a while back. My son (before he got sick in the spring) was going through a period of being difficult. Here's what people wrote:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=7379&highlight_key=y
">http://forums.cysticfibrosis.c...=7379&highlight_key=y
</a>

I do think it has a lot to do with your child's personality and your parenting style. Some kids are just responsible and compliant. Some kids are naturally defiant and rebellious (like my older son). Its not easy.

 

[Emily65Roses]

Finding the right balance is smart. Make sure he KNOWS what his meds and stuff mean, but do NOT push. I know that will be harder than hell, but if you push him to do his meds, you will also push him away. You really need to make sure not to push too hard. The real difficult part being, that your parental intuition will tell you to. My mom knew I was skipping meds and smoking pot on occasion, and she still never told me to stop. Because of that, I never really stopped listening to her, and I stopped doing all of that on my own in a fairly short period of time. If she had pushed, I probably would've kept doing it longer, and delved in deeper.

 

[Mockingbird]

Mybe if things aren't going well in the furutre, try getting him to see a good therapist. That helped me a lot in my teenage years.

 

[coltsfan715]

I agree with trying to find a good balance. Just make sure he really knows how important it is to everyone and for his health that he continue to do his meds, and not from a "preaching" doctor but from you guys(his parents and friends). I always had docs preaching to me about the importance of it all and I would just think yeah yeah sure you are supposed to say that your the doc.

I rebelled a little and tried to skip my meds(lasted a few months - maybe 3 or so), then my attitude changed once I got real sick. I unfortunately was dumb and let my stubbornness really affect my health, which I regret, but since then I have stayed pretty on top of things. Sometimes we (as kids) just need to make the mistakes and learn from them. I know it has got to be hard to watch, especially from what my mom has told me, but the best you can do is try to educate your kid and hope that they see the reasons for what you are saying.

Good Luck,
Lindsey

I agree with Emily too try not to push TOO hard. You have to push a little but don't drive him to go against you I had that problem with my mom a little.

 

[wanderlost]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Finding the right balance is smart. Make sure he KNOWS what his meds and stuff mean, but do NOT push. I know that will be harder than hell, but if you push him to do his meds, you will also push him away. You really need to make sure not to push too hard. The real difficult part being, that your parental intuition will tell you to. My mom knew I was skipping meds and smoking pot on occasion, and she still never told me to stop. Because of that, I never really stopped listening to her, and I stopped doing all of that on my own in a fairly short period of time. If she had pushed, I probably would've kept doing it longer, and delved in deeper.</end quote></div>

yup - I was the same. Plus, I kept my Cf hidden pretty much at the time, and my parents understood that that was importnant to me, so they were understanding about me not wanting my Cf exposed. I was on a swim team at the time, which ke t my lungs clear and helped keep me off antibiotics, so that was a good shield for me in not wanting people to know - but my parents did make me go to swim practice, even when i didn't want to, and I am grateful for that. But I was also caught with cigarettes and smoking pot and drinking and doing other teenaged things. They always reminded me about the smoking with Cf, but in a "we know you already know better," respectful, kind of way, so that rebellion was short lived.

 

[LisaV]

I'm not a parent, but in remembering my husband talk about this time I'd say what was most helpful for him was when his parents encouraed his adventuresome spirit in all thins and ave him lots of adult responsibilities in general (like taking care of younger relatives,part time jobs, household jobs, vacations with friends and extended family rather than them, regular camp, etc). The more they treated him like a grownup - like someone who would be going out on his own into the world soon - the more he took on the responsibility for all of his care - including his health.

 

[welshgirl]

bless you, everyone of you. you are all really kind and thankyou for your advice.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EnergyGal]

If your child rebels tell them like it is. You have a mild case now but if you keep missing treatments then you will no longer have a mild case and life will be more challenging for you. I do not remember having a rebellious stage and my parents told me that. I told them if I did rebel I would not be alive so I knew the ropes at a young age.