Independence

[Jane]

My question is, for those of you who stayed home after high school, how did you maintain your independence while living at home? We'd like to give our son more privacy and in turn hand over the responsiblity for his own health care, but its so hard we're all living in the same household.

ANy advice?

 

[Jane]

My question is, for those of you who stayed home after high school, how did you maintain your independence while living at home? We'd like to give our son more privacy and in turn hand over the responsiblity for his own health care, but its so hard we're all living in the same household.

ANy advice?

 

[Jane]

My question is, for those of you who stayed home after high school, how did you maintain your independence while living at home? We'd like to give our son more privacy and in turn hand over the responsiblity for his own health care, but its so hard we're all living in the same household.

ANy advice?

 

[Jane]

My question is, for those of you who stayed home after high school, how did you maintain your independence while living at home? We'd like to give our son more privacy and in turn hand over the responsiblity for his own health care, but its so hard we're all living in the same household.

ANy advice?

 

[Jane]

My question is, for those of you who stayed home after high school, how did you maintain your independence while living at home? We'd like to give our son more privacy and in turn hand over the responsiblity for his own health care, but its so hard we're all living in the same household.
<br />
<br />ANy advice?
<br />

 

[bittyhorse23]

I have pretty much been in charge of my meds since high school even before. My mom still to this day will ask if I took my enzymes though <img src="i/expressions/face-icon-small-smile.gif" border="0">

I lived at home while going to college. I stuck to my room most of the time or would hang out at friends' houses. All of my medical stuff was in my room except my enzymes which I kept in the kitchen because duh thats where the food is <img src="i/expressions/face-icon-small-smile.gif" border="0"> So I was in charge of making sure I took my abx and my nebs. I didn't do a very good job but my mom was not the greatest at remembering either when I was younger so I was never "fully trained" (NOT dissing my mom! Things were alot different in regards to treatments when I was a kid).

I don't really know what the set up is like at your house. Is his stuff all over the house, or confined to one area, or confined to his room? I would think giving him more CF independence would be alot like a normal independence, though I don't know how to give either. Maybe if you are the one always telling him to "do your nebs" you tell him that now he needs to start remembering to do them. You will still be able to hear if he is doing them since he will be at home, so if he isn't you can step in.

That is really all I got for ya and I don't know how useful it was <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

I have pretty much been in charge of my meds since high school even before. My mom still to this day will ask if I took my enzymes though <img src="i/expressions/face-icon-small-smile.gif" border="0">

I lived at home while going to college. I stuck to my room most of the time or would hang out at friends' houses. All of my medical stuff was in my room except my enzymes which I kept in the kitchen because duh thats where the food is <img src="i/expressions/face-icon-small-smile.gif" border="0"> So I was in charge of making sure I took my abx and my nebs. I didn't do a very good job but my mom was not the greatest at remembering either when I was younger so I was never "fully trained" (NOT dissing my mom! Things were alot different in regards to treatments when I was a kid).

I don't really know what the set up is like at your house. Is his stuff all over the house, or confined to one area, or confined to his room? I would think giving him more CF independence would be alot like a normal independence, though I don't know how to give either. Maybe if you are the one always telling him to "do your nebs" you tell him that now he needs to start remembering to do them. You will still be able to hear if he is doing them since he will be at home, so if he isn't you can step in.

That is really all I got for ya and I don't know how useful it was <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

I have pretty much been in charge of my meds since high school even before. My mom still to this day will ask if I took my enzymes though <img src="i/expressions/face-icon-small-smile.gif" border="0">

I lived at home while going to college. I stuck to my room most of the time or would hang out at friends' houses. All of my medical stuff was in my room except my enzymes which I kept in the kitchen because duh thats where the food is <img src="i/expressions/face-icon-small-smile.gif" border="0"> So I was in charge of making sure I took my abx and my nebs. I didn't do a very good job but my mom was not the greatest at remembering either when I was younger so I was never "fully trained" (NOT dissing my mom! Things were alot different in regards to treatments when I was a kid).

I don't really know what the set up is like at your house. Is his stuff all over the house, or confined to one area, or confined to his room? I would think giving him more CF independence would be alot like a normal independence, though I don't know how to give either. Maybe if you are the one always telling him to "do your nebs" you tell him that now he needs to start remembering to do them. You will still be able to hear if he is doing them since he will be at home, so if he isn't you can step in.

That is really all I got for ya and I don't know how useful it was <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

I have pretty much been in charge of my meds since high school even before. My mom still to this day will ask if I took my enzymes though <img src="i/expressions/face-icon-small-smile.gif" border="0">

I lived at home while going to college. I stuck to my room most of the time or would hang out at friends' houses. All of my medical stuff was in my room except my enzymes which I kept in the kitchen because duh thats where the food is <img src="i/expressions/face-icon-small-smile.gif" border="0"> So I was in charge of making sure I took my abx and my nebs. I didn't do a very good job but my mom was not the greatest at remembering either when I was younger so I was never "fully trained" (NOT dissing my mom! Things were alot different in regards to treatments when I was a kid).

I don't really know what the set up is like at your house. Is his stuff all over the house, or confined to one area, or confined to his room? I would think giving him more CF independence would be alot like a normal independence, though I don't know how to give either. Maybe if you are the one always telling him to "do your nebs" you tell him that now he needs to start remembering to do them. You will still be able to hear if he is doing them since he will be at home, so if he isn't you can step in.

That is really all I got for ya and I don't know how useful it was <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

I have pretty much been in charge of my meds since high school even before. My mom still to this day will ask if I took my enzymes though <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I lived at home while going to college. I stuck to my room most of the time or would hang out at friends' houses. All of my medical stuff was in my room except my enzymes which I kept in the kitchen because duh thats where the food is <img src="i/expressions/face-icon-small-smile.gif" border="0"> So I was in charge of making sure I took my abx and my nebs. I didn't do a very good job but my mom was not the greatest at remembering either when I was younger so I was never "fully trained" (NOT dissing my mom! Things were alot different in regards to treatments when I was a kid).
<br />
<br />I don't really know what the set up is like at your house. Is his stuff all over the house, or confined to one area, or confined to his room? I would think giving him more CF independence would be alot like a normal independence, though I don't know how to give either. Maybe if you are the one always telling him to "do your nebs" you tell him that now he needs to start remembering to do them. You will still be able to hear if he is doing them since he will be at home, so if he isn't you can step in.
<br />
<br />That is really all I got for ya and I don't know how useful it was <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br /><img src="i/expressions/heart.gif" border="0">

 

[Alyssa]

My daughter wasn't diagnosed until age 14, it only took about 2-3 months to fall into a routine for her.... after that I never had to ask her if she had done her meds or not, she just figured out what time she needed to get up and or stay up to get it done....so for us it just sort of happened naturally. For several years we shared the responsibility of cleaning the nebs, then by the time she was 17 she started doing it herself. She didn't take on the responsibility of ordering her own meds until very recently though and that is only because she did move out and has her own health insurance now.

My son is a little different story... he is soon to be 22 and just started treatments about 9 months ago. He also is a high function autistic and he still lives at home. I do have to remind him to do his medicine (usually only his first treatment of the day), but that isn't really any different than all the other things I have to remind him to do (eat, shower etc) and or do for him because of his autism. He goes to bed later than me and he will always do his 2nd treatment by himself though... so that means he gets his Pumozyme, Hypertonic Saline and vest going by himself (I still wash all the cups) But he too has learned on his own that he feels better when he doesn't skip treatments and tries to do it without being reminded.

So I guess for us, I didn't really "do" anything magical, we just sort of fell into a routine and the kids learned that if they didn't do their treatments, their lungs produce more mucus and they don't feel as well. I'm sure it would have been harder to manage if they didn't cooperate so well

Another thing I guess I did do to help get them organized is pick a place for all the supplies and extra medications to be so they can tell when they are running low on something or know where to get more meds when one runs out etc..... perhaps if you are not already doing something like this... setting up everything in it's place and going over it with him prior to "handing over" the responsibility to him would help.... give him the tools to manage it for himself and he will be more likely to succeed at doing it. You might also consider staging things out... give him one or two things to manage on his own that he hasn't done before....don't throw it all at him at one time.

 

[Alyssa]

My daughter wasn't diagnosed until age 14, it only took about 2-3 months to fall into a routine for her.... after that I never had to ask her if she had done her meds or not, she just figured out what time she needed to get up and or stay up to get it done....so for us it just sort of happened naturally. For several years we shared the responsibility of cleaning the nebs, then by the time she was 17 she started doing it herself. She didn't take on the responsibility of ordering her own meds until very recently though and that is only because she did move out and has her own health insurance now.

My son is a little different story... he is soon to be 22 and just started treatments about 9 months ago. He also is a high function autistic and he still lives at home. I do have to remind him to do his medicine (usually only his first treatment of the day), but that isn't really any different than all the other things I have to remind him to do (eat, shower etc) and or do for him because of his autism. He goes to bed later than me and he will always do his 2nd treatment by himself though... so that means he gets his Pumozyme, Hypertonic Saline and vest going by himself (I still wash all the cups) But he too has learned on his own that he feels better when he doesn't skip treatments and tries to do it without being reminded.

So I guess for us, I didn't really "do" anything magical, we just sort of fell into a routine and the kids learned that if they didn't do their treatments, their lungs produce more mucus and they don't feel as well. I'm sure it would have been harder to manage if they didn't cooperate so well

Another thing I guess I did do to help get them organized is pick a place for all the supplies and extra medications to be so they can tell when they are running low on something or know where to get more meds when one runs out etc..... perhaps if you are not already doing something like this... setting up everything in it's place and going over it with him prior to "handing over" the responsibility to him would help.... give him the tools to manage it for himself and he will be more likely to succeed at doing it. You might also consider staging things out... give him one or two things to manage on his own that he hasn't done before....don't throw it all at him at one time.

 

[Alyssa]

My daughter wasn't diagnosed until age 14, it only took about 2-3 months to fall into a routine for her.... after that I never had to ask her if she had done her meds or not, she just figured out what time she needed to get up and or stay up to get it done....so for us it just sort of happened naturally. For several years we shared the responsibility of cleaning the nebs, then by the time she was 17 she started doing it herself. She didn't take on the responsibility of ordering her own meds until very recently though and that is only because she did move out and has her own health insurance now.

My son is a little different story... he is soon to be 22 and just started treatments about 9 months ago. He also is a high function autistic and he still lives at home. I do have to remind him to do his medicine (usually only his first treatment of the day), but that isn't really any different than all the other things I have to remind him to do (eat, shower etc) and or do for him because of his autism. He goes to bed later than me and he will always do his 2nd treatment by himself though... so that means he gets his Pumozyme, Hypertonic Saline and vest going by himself (I still wash all the cups) But he too has learned on his own that he feels better when he doesn't skip treatments and tries to do it without being reminded.

So I guess for us, I didn't really "do" anything magical, we just sort of fell into a routine and the kids learned that if they didn't do their treatments, their lungs produce more mucus and they don't feel as well. I'm sure it would have been harder to manage if they didn't cooperate so well

Another thing I guess I did do to help get them organized is pick a place for all the supplies and extra medications to be so they can tell when they are running low on something or know where to get more meds when one runs out etc..... perhaps if you are not already doing something like this... setting up everything in it's place and going over it with him prior to "handing over" the responsibility to him would help.... give him the tools to manage it for himself and he will be more likely to succeed at doing it. You might also consider staging things out... give him one or two things to manage on his own that he hasn't done before....don't throw it all at him at one time.

 

[Alyssa]

My daughter wasn't diagnosed until age 14, it only took about 2-3 months to fall into a routine for her.... after that I never had to ask her if she had done her meds or not, she just figured out what time she needed to get up and or stay up to get it done....so for us it just sort of happened naturally. For several years we shared the responsibility of cleaning the nebs, then by the time she was 17 she started doing it herself. She didn't take on the responsibility of ordering her own meds until very recently though and that is only because she did move out and has her own health insurance now.

My son is a little different story... he is soon to be 22 and just started treatments about 9 months ago. He also is a high function autistic and he still lives at home. I do have to remind him to do his medicine (usually only his first treatment of the day), but that isn't really any different than all the other things I have to remind him to do (eat, shower etc) and or do for him because of his autism. He goes to bed later than me and he will always do his 2nd treatment by himself though... so that means he gets his Pumozyme, Hypertonic Saline and vest going by himself (I still wash all the cups) But he too has learned on his own that he feels better when he doesn't skip treatments and tries to do it without being reminded.

So I guess for us, I didn't really "do" anything magical, we just sort of fell into a routine and the kids learned that if they didn't do their treatments, their lungs produce more mucus and they don't feel as well. I'm sure it would have been harder to manage if they didn't cooperate so well

Another thing I guess I did do to help get them organized is pick a place for all the supplies and extra medications to be so they can tell when they are running low on something or know where to get more meds when one runs out etc..... perhaps if you are not already doing something like this... setting up everything in it's place and going over it with him prior to "handing over" the responsibility to him would help.... give him the tools to manage it for himself and he will be more likely to succeed at doing it. You might also consider staging things out... give him one or two things to manage on his own that he hasn't done before....don't throw it all at him at one time.

 

[Alyssa]

My daughter wasn't diagnosed until age 14, it only took about 2-3 months to fall into a routine for her.... after that I never had to ask her if she had done her meds or not, she just figured out what time she needed to get up and or stay up to get it done....so for us it just sort of happened naturally. For several years we shared the responsibility of cleaning the nebs, then by the time she was 17 she started doing it herself. She didn't take on the responsibility of ordering her own meds until very recently though and that is only because she did move out and has her own health insurance now.
<br />
<br />My son is a little different story... he is soon to be 22 and just started treatments about 9 months ago. He also is a high function autistic and he still lives at home. I do have to remind him to do his medicine (usually only his first treatment of the day), but that isn't really any different than all the other things I have to remind him to do (eat, shower etc) and or do for him because of his autism. He goes to bed later than me and he will always do his 2nd treatment by himself though... so that means he gets his Pumozyme, Hypertonic Saline and vest going by himself (I still wash all the cups) But he too has learned on his own that he feels better when he doesn't skip treatments and tries to do it without being reminded.
<br />
<br />So I guess for us, I didn't really "do" anything magical, we just sort of fell into a routine and the kids learned that if they didn't do their treatments, their lungs produce more mucus and they don't feel as well. I'm sure it would have been harder to manage if they didn't cooperate so well
<br />
<br />Another thing I guess I did do to help get them organized is pick a place for all the supplies and extra medications to be so they can tell when they are running low on something or know where to get more meds when one runs out etc..... perhaps if you are not already doing something like this... setting up everything in it's place and going over it with him prior to "handing over" the responsibility to him would help.... give him the tools to manage it for himself and he will be more likely to succeed at doing it. You might also consider staging things out... give him one or two things to manage on his own that he hasn't done before....don't throw it all at him at one time.

 

[Sevenstars]

I never lived at home after HS, but my advice would be to let him start taking responsibility for his treatments. If you go into the doctor with him, make sure HE asks all the questions, and does the talking. You might want to 'rehearse' what he needs to talk about beforehand, and eventually he will come up with things to ask on his own. Is he knowledgable about CF in general? His bugs and treatments? Complications? If not, then teach him things he might not know yet (but there probably isn't much!) and teach him the things you have been dealing with all this time - like what he needs to know about dealing with insurance! That is the hardest part for any cf-er, really. We know the nuts and bolts of doing treatments so that isn't hard, but insurance sucks.

Best of luck

 

[Sevenstars]

I never lived at home after HS, but my advice would be to let him start taking responsibility for his treatments. If you go into the doctor with him, make sure HE asks all the questions, and does the talking. You might want to 'rehearse' what he needs to talk about beforehand, and eventually he will come up with things to ask on his own. Is he knowledgable about CF in general? His bugs and treatments? Complications? If not, then teach him things he might not know yet (but there probably isn't much!) and teach him the things you have been dealing with all this time - like what he needs to know about dealing with insurance! That is the hardest part for any cf-er, really. We know the nuts and bolts of doing treatments so that isn't hard, but insurance sucks.

Best of luck

 

[Sevenstars]

I never lived at home after HS, but my advice would be to let him start taking responsibility for his treatments. If you go into the doctor with him, make sure HE asks all the questions, and does the talking. You might want to 'rehearse' what he needs to talk about beforehand, and eventually he will come up with things to ask on his own. Is he knowledgable about CF in general? His bugs and treatments? Complications? If not, then teach him things he might not know yet (but there probably isn't much!) and teach him the things you have been dealing with all this time - like what he needs to know about dealing with insurance! That is the hardest part for any cf-er, really. We know the nuts and bolts of doing treatments so that isn't hard, but insurance sucks.

Best of luck

 

[Sevenstars]

I never lived at home after HS, but my advice would be to let him start taking responsibility for his treatments. If you go into the doctor with him, make sure HE asks all the questions, and does the talking. You might want to 'rehearse' what he needs to talk about beforehand, and eventually he will come up with things to ask on his own. Is he knowledgable about CF in general? His bugs and treatments? Complications? If not, then teach him things he might not know yet (but there probably isn't much!) and teach him the things you have been dealing with all this time - like what he needs to know about dealing with insurance! That is the hardest part for any cf-er, really. We know the nuts and bolts of doing treatments so that isn't hard, but insurance sucks.

Best of luck

 

[Sevenstars]

I never lived at home after HS, but my advice would be to let him start taking responsibility for his treatments. If you go into the doctor with him, make sure HE asks all the questions, and does the talking. You might want to 'rehearse' what he needs to talk about beforehand, and eventually he will come up with things to ask on his own. Is he knowledgable about CF in general? His bugs and treatments? Complications? If not, then teach him things he might not know yet (but there probably isn't much!) and teach him the things you have been dealing with all this time - like what he needs to know about dealing with insurance! That is the hardest part for any cf-er, really. We know the nuts and bolts of doing treatments so that isn't hard, but insurance sucks.
<br />
<br />Best of luck