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tammykrumrey
Guest
You guys are really awesome! Thanks for the input!
Tammy, I think it's awesome that you're straightforward with your kids. I think it helps a lot, because they don't ever have the 'shock' thing.
I think teenagers jsut need to be talked to again and again. They had to give Ry the speech a few times when he'd fall behind and say "screw it, I don't want to". Sometimes the speech worked quickly, sometimes he had to mope for a few days. teenagers are dramatic, CF or not, and 14-16 is the worst. He'll get through it, he'll just be annoying for a while lol.
I think teenagers jsut need to be talked to again and again. They had to give Ry the speech a few times when he'd fall behind and say "screw it, I don't want to". Sometimes the speech worked quickly, sometimes he had to mope for a few days. teenagers are dramatic, CF or not, and 14-16 is the worst. He'll get through it, he'll just be annoying for a while lol.
Tammy-
I have a 20 year old son that was very non-compliant. Every treatment, every day was a huge battle. I was exhausted just getting ready in the morning. He would go as far as to turn on his vest so I would think it was running, flush the pills down the stools.
He didn't do well in shcool either. He didn't keep a high social life because he felt everyone felt sorry for him. To him, he felt like he had the big X marked across his body that said "look at me, I am the sick boy". He also has always had a lot of medical issues. Hospitalized 4-6 times a year. CFRD, B. Cepacia along with Kidney stones (constantly) and sinus problems.
His non-complaince started around 13 (15 being at his worse). 15 is a very tough age no matter what.
I use to search any resorces I could for help in dealing with the non-complaince. I was at my witts end. I directed him to links of other young adults, got him into counseling, even had other young adults email to him. All of that just made him more angry. I din't think i would ever get to the day, where he would ever be compliant let alone be responsible for himself.
The good news it did happen. Today, he has completely taken over. Never misses a treatment, medication. Schedules his own doctors appointment and orders his own meds. Today he is in Germany on vacation and even called the airlines to see what he needed to do to ensure they could refridgerate his meds and his meds would be safe. he has educated the family he is visiting on CF.
How did it happen? Very slowly. First and by the best advice. When I got off his back. Everything between us would become a question. If he was coughing more, I might say "Do you think it is time to call the doctor?" "Do you think an extra treatment might help" If he said NO. I dropped it and secretly emailed the doctor with my concerns. The doctor would usually then call him and suggest an appointment. I gave little responsibilities to him. Things that I knew he could handle. I started by showing him how to order his meds online. I stayed (in private) in heavy communication with his doctor. His doctor help by taking the approach of this. he would order 125%, expecting 50% and sometimes got 75%.
Being in conversation with the doctor (hopefully, I did have a doctor that would blame me when he refused) can sometimes guide him. He started going into the appointments alone. The nurse would stay and talk to me. He was able to get to the point that he felt comfortable with the doctor and the doctor involved him (not me) in several of the choice makings. One time he needed IV's. Cory threw a fit and was refusing to go to the hospital. So the doctor told him. 1 week. I will put you on 1 week of oral antibiotics and increase treatments. If you feel that you don't need to go to the hospital then this is what you need to do. "Prove me wrong". If he was still in the same shape at the end of the week, he went in.
We had a lot of ups and downs. As difficult as it is to release some of the control, it is worth it in the long run. As a parent that wants the absolute best for your child, it is the MOST difficult thing to do. Even today, I am comfortable knowing that my son is taking full control. But that urge to say "do you take your enzymes"? is still there.
Just last week, Cory told me: "I am done with my pitty party, I am ready to live life" I never thought I would ever see this day.
hang in there. It does get better
I have a 20 year old son that was very non-compliant. Every treatment, every day was a huge battle. I was exhausted just getting ready in the morning. He would go as far as to turn on his vest so I would think it was running, flush the pills down the stools.
He didn't do well in shcool either. He didn't keep a high social life because he felt everyone felt sorry for him. To him, he felt like he had the big X marked across his body that said "look at me, I am the sick boy". He also has always had a lot of medical issues. Hospitalized 4-6 times a year. CFRD, B. Cepacia along with Kidney stones (constantly) and sinus problems.
His non-complaince started around 13 (15 being at his worse). 15 is a very tough age no matter what.
I use to search any resorces I could for help in dealing with the non-complaince. I was at my witts end. I directed him to links of other young adults, got him into counseling, even had other young adults email to him. All of that just made him more angry. I din't think i would ever get to the day, where he would ever be compliant let alone be responsible for himself.
The good news it did happen. Today, he has completely taken over. Never misses a treatment, medication. Schedules his own doctors appointment and orders his own meds. Today he is in Germany on vacation and even called the airlines to see what he needed to do to ensure they could refridgerate his meds and his meds would be safe. he has educated the family he is visiting on CF.
How did it happen? Very slowly. First and by the best advice. When I got off his back. Everything between us would become a question. If he was coughing more, I might say "Do you think it is time to call the doctor?" "Do you think an extra treatment might help" If he said NO. I dropped it and secretly emailed the doctor with my concerns. The doctor would usually then call him and suggest an appointment. I gave little responsibilities to him. Things that I knew he could handle. I started by showing him how to order his meds online. I stayed (in private) in heavy communication with his doctor. His doctor help by taking the approach of this. he would order 125%, expecting 50% and sometimes got 75%.
Being in conversation with the doctor (hopefully, I did have a doctor that would blame me when he refused) can sometimes guide him. He started going into the appointments alone. The nurse would stay and talk to me. He was able to get to the point that he felt comfortable with the doctor and the doctor involved him (not me) in several of the choice makings. One time he needed IV's. Cory threw a fit and was refusing to go to the hospital. So the doctor told him. 1 week. I will put you on 1 week of oral antibiotics and increase treatments. If you feel that you don't need to go to the hospital then this is what you need to do. "Prove me wrong". If he was still in the same shape at the end of the week, he went in.
We had a lot of ups and downs. As difficult as it is to release some of the control, it is worth it in the long run. As a parent that wants the absolute best for your child, it is the MOST difficult thing to do. Even today, I am comfortable knowing that my son is taking full control. But that urge to say "do you take your enzymes"? is still there.
Just last week, Cory told me: "I am done with my pitty party, I am ready to live life" I never thought I would ever see this day.
hang in there. It does get better
T
tammykrumrey
Guest
momtocory,
Thank you for your story. I am sure that my sister will find it very encouraging. I am sure you are very proud of your son and how well he has turned around. He sounds like a great young man!
Thank you for your story. I am sure that my sister will find it very encouraging. I am sure you are very proud of your son and how well he has turned around. He sounds like a great young man!
tell him to get his butt on here and talk to me! haha, i think we could relate. sounds like had it worse then me, but i had a collapsed lung when i was younger and totally swelled up to- so ive felt his pain, literally! if he really doesnt want to come on here, PM me, and ill give you my email. or if you wanna give me his i'll just email him 
sounds like you'll be on the right track soon, we all are here for you!!!
sounds like you'll be on the right track soon, we all are here for you!!!
This is a very hard matter to deal with. Just recently I dealt with
this and I am almost 21, for me I am one of those people that can't
just take the doctors word for it and has to actually experience
it. I thankfully realized that the doctors are right and what they
tell you really will help you recently. It is a hard thing to deal
with in your head, my thoughts were like your nephews--- I am gonna
die anyway so why not just get it over with--- but then I found
something that I wanted and I am fighting for it. When I was
younger though my parents would sit with me while I did my machines
and make sure I did them correctly and watch the clock
themselves... sure your sister is already busy but she needs to
make time for that... my parents also handed me my pills--- he is
still at an age were that is okay to do. I hope you find something
to help--
this and I am almost 21, for me I am one of those people that can't
just take the doctors word for it and has to actually experience
it. I thankfully realized that the doctors are right and what they
tell you really will help you recently. It is a hard thing to deal
with in your head, my thoughts were like your nephews--- I am gonna
die anyway so why not just get it over with--- but then I found
something that I wanted and I am fighting for it. When I was
younger though my parents would sit with me while I did my machines
and make sure I did them correctly and watch the clock
themselves... sure your sister is already busy but she needs to
make time for that... my parents also handed me my pills--- he is
still at an age were that is okay to do. I hope you find something
to help--
Emily65Roses
New member
I'm going to repeat what others said and add my own thing for what it's worth.
I, first of all, want to thank you for being direct with your girls, no matter their age. It seems that very few CF parents do that these days, because things like (hey, if you want to live, I suggest you do your meds) are NEGATIVE BOOOOO!!! Haha. I think it's the best way to go, though.
I think what Ry's parents (Allie's posts) did was smart. Teenagers are a pain in the @ss, and every once and a while, they'll need a repeat reality smack in the face. If you can provide that, it'll probably do worlds of good.
The only other thing I wish to add is: Don't nag. It seriously will get you nowhere. This is going to horrify some parents to think about, but in high school, I smoked pot. Yes, smoked. Brownies are terribly difficult to come by. It wasn't every day, I wasn't one of <i>those</i> kids. It was at things like parties, gatherings, etc. But it was still more often than I should have, by a long shot. My parents knew. They didn't nag. I can only guess how hard that must've been. Actually, my parents never even gave me the "If you want to die, that's your business" speech. I just figured it out and stopped on my own. But if you say things about particular stuff like not smoking, that will only make them want to more. "CF can't tell me what to do, and neither can you, mom!" *runs out to smoke 10 joints* You get the idea. Hahaha.
I'd say the way you're going is most certainly the right direction. All you really have to do is add to it (maybe become a little more direct/dramatic as they get older "If you don't do your meds, you will die much sooner. If that's what you want, that's your decision, but there will be no one to blame but yourself" much like what Ry's parents said) as they get older. Teenagers really are a pain in the butt. Bigtime. For me, I was worst between 15 and 17. Heh. But then I figured it out. And now I'm with someone who matters very much to me and he won't let me skip my stuff. Somehow, "Do your meds, damnit!" coming from my fiance is much more compelling than when it comes from my parents. Hahaha. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I, first of all, want to thank you for being direct with your girls, no matter their age. It seems that very few CF parents do that these days, because things like (hey, if you want to live, I suggest you do your meds) are NEGATIVE BOOOOO!!! Haha. I think it's the best way to go, though.
I think what Ry's parents (Allie's posts) did was smart. Teenagers are a pain in the @ss, and every once and a while, they'll need a repeat reality smack in the face. If you can provide that, it'll probably do worlds of good.
The only other thing I wish to add is: Don't nag. It seriously will get you nowhere. This is going to horrify some parents to think about, but in high school, I smoked pot. Yes, smoked. Brownies are terribly difficult to come by. It wasn't every day, I wasn't one of <i>those</i> kids. It was at things like parties, gatherings, etc. But it was still more often than I should have, by a long shot. My parents knew. They didn't nag. I can only guess how hard that must've been. Actually, my parents never even gave me the "If you want to die, that's your business" speech. I just figured it out and stopped on my own. But if you say things about particular stuff like not smoking, that will only make them want to more. "CF can't tell me what to do, and neither can you, mom!" *runs out to smoke 10 joints* You get the idea. Hahaha.
I'd say the way you're going is most certainly the right direction. All you really have to do is add to it (maybe become a little more direct/dramatic as they get older "If you don't do your meds, you will die much sooner. If that's what you want, that's your decision, but there will be no one to blame but yourself" much like what Ry's parents said) as they get older. Teenagers really are a pain in the butt. Bigtime. For me, I was worst between 15 and 17. Heh. But then I figured it out. And now I'm with someone who matters very much to me and he won't let me skip my stuff. Somehow, "Do your meds, damnit!" coming from my fiance is much more compelling than when it comes from my parents. Hahaha. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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tammykrumrey
Guest
Kate, Stephanie and Emily,
Thank you for all of your wise words! It is so wonderful to have a place to go to when you feel like you are up against the wall!
Thank you for all of your wise words! It is so wonderful to have a place to go to when you feel like you are up against the wall!
Tammy, I've been reading this thread with empathy, but I haven't had time to reply until now. My 15 yr old son has issues similar to what you described, in fact you could have just put in his name instead of your nephew's. He is very bright too, which makes it all the more infuriating. It is so hard on the family, so stressful...like we need any more stress.
It IS heartbreaking and I've told my son many times that it breaks my heart to watch him hurt himself. From what a lot of people told me, many CFers go through a similar thing and only come around when they have a "scare".
Its nice to hear how people turned themselves around, but telling someone to have a positive attitude is not realistic. Its like telling someone who is depressed to just snap out of it. There's more going on than just an attitude problem. We haven't found the perfect counselor yet, but we have one we like.
Cory's mom gave some good advice- back off and he'll come around. But that easier said than done. Its almost like a "tough love" situation. LisaV suggested a the ala-non literature. It seemed like it might be of help, but I have to admit I haven't looked into it yet. Here's a link to a thread I started in the spring when we were having a really hard time.
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=7379&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>
Its not easy and I don't have any answers yet. But I know how you feel.
It IS heartbreaking and I've told my son many times that it breaks my heart to watch him hurt himself. From what a lot of people told me, many CFers go through a similar thing and only come around when they have a "scare".
Its nice to hear how people turned themselves around, but telling someone to have a positive attitude is not realistic. Its like telling someone who is depressed to just snap out of it. There's more going on than just an attitude problem. We haven't found the perfect counselor yet, but we have one we like.
Cory's mom gave some good advice- back off and he'll come around. But that easier said than done. Its almost like a "tough love" situation. LisaV suggested a the ala-non literature. It seemed like it might be of help, but I have to admit I haven't looked into it yet. Here's a link to a thread I started in the spring when we were having a really hard time.
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=7379&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>
Its not easy and I don't have any answers yet. But I know how you feel.
T
tammykrumrey
Guest
Jane,
Thank you for your reply. I am sorry that things are rough there too. My heart is breaking for my sister and her husband. They have three sons, and only Dalton, the eldest, has CF.
He has so much anger built up in his small body! And I do feel that it runs much deeper, like you said, than just a simple straighten up and snap out of it! Maybe some kids need just a 'scare', but I think my nephew is so incredibly strong willed and has such a hard shell that it is going to take a lot to get through to him. I am not sure how well his therapist is helping. Maybe they need to find a different one. Or a second opinion.
I know his non-compliance and negative attitude are a great concern, and it seems that it is not unusual for someone with or without CF to go through these difficult periods. I think it is the anger that has them so worried right now.
Again, thank you for sharing your situation with me. I have passed on every single reply to my sister and brother in law.
I will also check out your link!
Thank you for your reply. I am sorry that things are rough there too. My heart is breaking for my sister and her husband. They have three sons, and only Dalton, the eldest, has CF.
He has so much anger built up in his small body! And I do feel that it runs much deeper, like you said, than just a simple straighten up and snap out of it! Maybe some kids need just a 'scare', but I think my nephew is so incredibly strong willed and has such a hard shell that it is going to take a lot to get through to him. I am not sure how well his therapist is helping. Maybe they need to find a different one. Or a second opinion.
I know his non-compliance and negative attitude are a great concern, and it seems that it is not unusual for someone with or without CF to go through these difficult periods. I think it is the anger that has them so worried right now.
Again, thank you for sharing your situation with me. I have passed on every single reply to my sister and brother in law.
I will also check out your link!