Teacher 'outed' my daughter!

[Childressj]

Also for future reference, if you do not want the teachers to publicly announce anything about illnesses or diagnosis, please put it in writing each year and make sure that it goes into her file and that all the teachers are aware (they start to switch class in what 7th grade and have 7 different teachers) make sure all are aware so that your child can get help if needed but it is not advertised if not wanted. All privacy talk aside, teenager are very emotional during those 13-17 yrs. If you have any specific questions about HIPAA, I would be happy to answer or point you in the right direction. Jennifer

 

[Childressj]

Also for future reference, if you do not want the teachers to publicly announce anything about illnesses or diagnosis, please put it in writing each year and make sure that it goes into her file and that all the teachers are aware (they start to switch class in what 7th grade and have 7 different teachers) make sure all are aware so that your child can get help if needed but it is not advertised if not wanted. All privacy talk aside, teenager are very emotional during those 13-17 yrs. If you have any specific questions about HIPAA, I would be happy to answer or point you in the right direction. Jennifer

 

[Childressj]

Also for future reference, if you do not want the teachers to publicly announce anything about illnesses or diagnosis, please put it in writing each year and make sure that it goes into her file and that all the teachers are aware (they start to switch class in what 7th grade and have 7 different teachers) make sure all are aware so that your child can get help if needed but it is not advertised if not wanted. All privacy talk aside, teenager are very emotional during those 13-17 yrs. If you have any specific questions about HIPAA, I would be happy to answer or point you in the right direction. Jennifer

 

[Seana30]

Thank you Jennifer! That is great information to know!!

Courtney use to be open to others about her illness until she hit her teen years. Her close friends know but other than that she just wants to be considered "a normal teen." She will be starting high school next year and I think it should be her choice who she tells and does not tell.

Thanks for your help!

Seana

 

[Seana30]

Thank you Jennifer! That is great information to know!!

Courtney use to be open to others about her illness until she hit her teen years. Her close friends know but other than that she just wants to be considered "a normal teen." She will be starting high school next year and I think it should be her choice who she tells and does not tell.

Thanks for your help!

Seana

 

[Seana30]

Thank you Jennifer! That is great information to know!!

Courtney use to be open to others about her illness until she hit her teen years. Her close friends know but other than that she just wants to be considered "a normal teen." She will be starting high school next year and I think it should be her choice who she tells and does not tell.

Thanks for your help!

Seana

 

[bmombtoo]

Josh's class and his friends know he has CF. It doesn't seem to be a big deal for him or them; they just remind him to get his treatment or help his walk home if he looks wiped out.


I do understand how you feel the way you do. She should have asked your permission. Now you can just make the best of it......Jess wants to explain it to them further and how it affects her, and how she copes it may be good for her and them.

 

[bmombtoo]

Josh's class and his friends know he has CF. It doesn't seem to be a big deal for him or them; they just remind him to get his treatment or help his walk home if he looks wiped out.


I do understand how you feel the way you do. She should have asked your permission. Now you can just make the best of it......Jess wants to explain it to them further and how it affects her, and how she copes it may be good for her and them.

 

[bmombtoo]

Josh's class and his friends know he has CF. It doesn't seem to be a big deal for him or them; they just remind him to get his treatment or help his walk home if he looks wiped out.


I do understand how you feel the way you do. She should have asked your permission. Now you can just make the best of it......Jess wants to explain it to them further and how it affects her, and how she copes it may be good for her and them.

 

[mneville]

I honestly have no idea why having CF would be a "secret" thing...
Since the day Aidan was diagnosed, we have never kept quiet about it. We can't keep quiet - we need a cure!!
Sure, CF sucks. Yeah, my kid has to do extra treatments. Great, people know about it, pay attention to it and raise their awareness.
Aidan is not at all different other than he takes extra treatments and meds. I don't know if any of you have visited a public school classroom lately but there are kids on all sorts of meds ect...It certainly is not a big deal to the kids if we don't make it one. We have kids doing Xopenex treatments in the classroom during Math. Kids getting fed through their G tubes during Reading class. Who cares?

Megan

 

[mneville]

I honestly have no idea why having CF would be a "secret" thing...
Since the day Aidan was diagnosed, we have never kept quiet about it. We can't keep quiet - we need a cure!!
Sure, CF sucks. Yeah, my kid has to do extra treatments. Great, people know about it, pay attention to it and raise their awareness.
Aidan is not at all different other than he takes extra treatments and meds. I don't know if any of you have visited a public school classroom lately but there are kids on all sorts of meds ect...It certainly is not a big deal to the kids if we don't make it one. We have kids doing Xopenex treatments in the classroom during Math. Kids getting fed through their G tubes during Reading class. Who cares?

Megan

 

[mneville]

I honestly have no idea why having CF would be a "secret" thing...
Since the day Aidan was diagnosed, we have never kept quiet about it. We can't keep quiet - we need a cure!!
Sure, CF sucks. Yeah, my kid has to do extra treatments. Great, people know about it, pay attention to it and raise their awareness.
Aidan is not at all different other than he takes extra treatments and meds. I don't know if any of you have visited a public school classroom lately but there are kids on all sorts of meds ect...It certainly is not a big deal to the kids if we don't make it one. We have kids doing Xopenex treatments in the classroom during Math. Kids getting fed through their G tubes during Reading class. Who cares?

Megan

 

[ReneeP]

The KIDS care, that's who. The kids who are already dealing with CF and all that comes with it. I think it's wonderful to be open about it, and that's my preference. However, I also have to respect my daughters wishes. She is the one who has to go to school and deal with the kids. If your child told you he/she did not want people to know about it because he/she did not want other kids to feel sorry for him/her, would you not respect that choice? Would you ignore their wishes? I can't do that. My daughter is what is most important to me. I am all about <b>raising</b> awarness for CF, but I am more concerned about <b>raising</b> my children.

 

[ReneeP]

The KIDS care, that's who. The kids who are already dealing with CF and all that comes with it. I think it's wonderful to be open about it, and that's my preference. However, I also have to respect my daughters wishes. She is the one who has to go to school and deal with the kids. If your child told you he/she did not want people to know about it because he/she did not want other kids to feel sorry for him/her, would you not respect that choice? Would you ignore their wishes? I can't do that. My daughter is what is most important to me. I am all about <b>raising</b> awarness for CF, but I am more concerned about <b>raising</b> my children.

 

[ReneeP]

The KIDS care, that's who. The kids who are already dealing with CF and all that comes with it. I think it's wonderful to be open about it, and that's my preference. However, I also have to respect my daughters wishes. She is the one who has to go to school and deal with the kids. If your child told you he/she did not want people to know about it because he/she did not want other kids to feel sorry for him/her, would you not respect that choice? Would you ignore their wishes? I can't do that. My daughter is what is most important to me. I am all about <b>raising</b> awarness for CF, but I am more concerned about <b>raising</b> my children.

 

[welshwitch]

I'm a 27 year old woman w/ CF and I would have totally, compleltely DIED if this had happened to me in junior high! Ack! Poor daughter!

This thread is fascinating. It makes me realize something that I have been thinking about for years:

What should we do about people who we may not know who then GOOGLE our disease and then read all the morbid and statistically depressing information about it, and come to you with questions about your life expectancy, and such? In my experience, (especially in high school) when I let a friend know about my disease they always had a freak-out session and went to the library to research about it. Unbeknownst to me, the friends would discuss my disease when I wasn't there. I knew this was out of concern, but high schoolers can be cruel and I felt like I was defenseless against all this gossip.

I didn't know how to handle the situation properly.

I'm wondering if there are any resources out there for teenagers w/CF to take control of their disease and perhaps workshop ways to tell their friends without it sounding like they were under a death sentence. It's not good to have to feel like you have to hide the disease but it's also sometimes WAY SCARIER to disclose the information and deal with the questions, the tears, the fear, and the denial, etc. This would have been great for me when I was in high school. High school is dramatic enough without life-threatening illnesses thrown into the mix!

Now, as an "adult" I am definitely more open about it, but it still remains a major point of privacy! I feel like I'm finally ready to proactively deal with this disease...but I had to "work up to it" by thinking about it for many years. For better or for worse I never had hospitalizations or treatments that forced me to explain it....so it's almost like I conditioned myself to be in denial. Definitely something I continuously am working on.

Good luck and I know your daughter will come out of this fine.

--Welshwitch, 27 w/CF

 

[welshwitch]

I'm a 27 year old woman w/ CF and I would have totally, compleltely DIED if this had happened to me in junior high! Ack! Poor daughter!

This thread is fascinating. It makes me realize something that I have been thinking about for years:

What should we do about people who we may not know who then GOOGLE our disease and then read all the morbid and statistically depressing information about it, and come to you with questions about your life expectancy, and such? In my experience, (especially in high school) when I let a friend know about my disease they always had a freak-out session and went to the library to research about it. Unbeknownst to me, the friends would discuss my disease when I wasn't there. I knew this was out of concern, but high schoolers can be cruel and I felt like I was defenseless against all this gossip.

I didn't know how to handle the situation properly.

I'm wondering if there are any resources out there for teenagers w/CF to take control of their disease and perhaps workshop ways to tell their friends without it sounding like they were under a death sentence. It's not good to have to feel like you have to hide the disease but it's also sometimes WAY SCARIER to disclose the information and deal with the questions, the tears, the fear, and the denial, etc. This would have been great for me when I was in high school. High school is dramatic enough without life-threatening illnesses thrown into the mix!

Now, as an "adult" I am definitely more open about it, but it still remains a major point of privacy! I feel like I'm finally ready to proactively deal with this disease...but I had to "work up to it" by thinking about it for many years. For better or for worse I never had hospitalizations or treatments that forced me to explain it....so it's almost like I conditioned myself to be in denial. Definitely something I continuously am working on.

Good luck and I know your daughter will come out of this fine.

--Welshwitch, 27 w/CF

 

[welshwitch]

I'm a 27 year old woman w/ CF and I would have totally, compleltely DIED if this had happened to me in junior high! Ack! Poor daughter!

This thread is fascinating. It makes me realize something that I have been thinking about for years:

What should we do about people who we may not know who then GOOGLE our disease and then read all the morbid and statistically depressing information about it, and come to you with questions about your life expectancy, and such? In my experience, (especially in high school) when I let a friend know about my disease they always had a freak-out session and went to the library to research about it. Unbeknownst to me, the friends would discuss my disease when I wasn't there. I knew this was out of concern, but high schoolers can be cruel and I felt like I was defenseless against all this gossip.

I didn't know how to handle the situation properly.

I'm wondering if there are any resources out there for teenagers w/CF to take control of their disease and perhaps workshop ways to tell their friends without it sounding like they were under a death sentence. It's not good to have to feel like you have to hide the disease but it's also sometimes WAY SCARIER to disclose the information and deal with the questions, the tears, the fear, and the denial, etc. This would have been great for me when I was in high school. High school is dramatic enough without life-threatening illnesses thrown into the mix!

Now, as an "adult" I am definitely more open about it, but it still remains a major point of privacy! I feel like I'm finally ready to proactively deal with this disease...but I had to "work up to it" by thinking about it for many years. For better or for worse I never had hospitalizations or treatments that forced me to explain it....so it's almost like I conditioned myself to be in denial. Definitely something I continuously am working on.

Good luck and I know your daughter will come out of this fine.

--Welshwitch, 27 w/CF

 

[okok]

Hi

I just want to say that i absolutely understand how horrifying this must be for your daughter. I don't think that your daughter's desire to be able to discuss CF with the people she CHOOSES to has anything to do with you teaching her to feel ashamed or weird for having CF. I also don't think that because your daughter didn't want the entire class to know why she was hospitalized means that you or your family is ashamed of her disease. Everyone is different. Some people may willingly announce to the class that they have CF themselves while others may want to keep it private, both of which is OK.

I think it sounds as if you are doing a great job being respectful of your daughter's feelings. You can't change the way she feels right now so all you can do is give her compassion and love and help her get through this.

About the teacher... I agree that she should NOT have done that. Maybe if it is ok with your daughter you could discuss this with her so that in the future she knows not to do that to other students....? Also with future teachers you could emphasize that you would like them to keep the info private.

Good luck!

 

[okok]

Hi

I just want to say that i absolutely understand how horrifying this must be for your daughter. I don't think that your daughter's desire to be able to discuss CF with the people she CHOOSES to has anything to do with you teaching her to feel ashamed or weird for having CF. I also don't think that because your daughter didn't want the entire class to know why she was hospitalized means that you or your family is ashamed of her disease. Everyone is different. Some people may willingly announce to the class that they have CF themselves while others may want to keep it private, both of which is OK.

I think it sounds as if you are doing a great job being respectful of your daughter's feelings. You can't change the way she feels right now so all you can do is give her compassion and love and help her get through this.

About the teacher... I agree that she should NOT have done that. Maybe if it is ok with your daughter you could discuss this with her so that in the future she knows not to do that to other students....? Also with future teachers you could emphasize that you would like them to keep the info private.

Good luck!