Portrayed Life Expectancy Affecting Life Decisions

[Beccamom]

<P>As many of you know I have an 11 year old that is still in limbo in the diagnositic process for CF.  In the meantime, her pulmonologist has begun the "CF treatments" and she is doing much better, but still quite ill.  She now has a vest, alubuterol or Xopenex by nebulizer, Singulair, and on her fourth round of oral antibiotics this one for 20 days.  She will have bronchcoscopy next month.  She has failure to thrive.  She is colonized with staph a etc.  etc. etc. </P>
<P>In the meantime, the posting about Portrayed Life Expectancy was a very emotional one for me.  I had never thought about the life decisions I make for my daughter being affected by a possible shortened life expectancy until recently.  My daughter missed so many days of school this past school year with 3 hospitalizations that her home bound instruction will continue through the month of July to catch her up.  Meanwhile, she is a gifted child by IQ and placement in her gifted program in her school.  I had always assumed she would be in honors classes and attend the college of her choice.  She wants to be an Engineer and attend MIT.  She has accelerated 2 grades in math at her request.  As parents we have taken the position of what she wants in school she must request.  So when she wanted to accelerate a grade and then a second grade in math we did not go with her to the principal or the Superintendent, but had her go alone to show this was her decision.  So now she was not placed in an honors English class for the fall based on a test she took when she was very ill.  I would normally have her go to the principal and request entrance into the class because that is what she wants.  </P>
<P>However, her homebound instructor hit a nerve with me.  She said well if she is going to miss so much school again then why put in her in a more challenging class with extra projects.  How do you handle school decisions with chronically ill children?  Do teachers treat them differently?  Do you honestly have the same expectations in school for your child with CF and your other children?  I want to be realistic regarding my daughter's future, but don't want to hold her back either.  </P>

 

[Beccamom]

<P>As many of you know I have an 11 year old that is still in limbo in the diagnositic process for CF. In the meantime, her pulmonologist has begun the "CF treatments" and she is doing much better, but still quite ill. She now has a vest, alubuterol or Xopenex by nebulizer, Singulair, and on her fourth round of oral antibiotics this one for 20 days. She will have bronchcoscopy next month. She has failure to thrive. She is colonized with staph a etc. etc. etc. </P>
<P>In the meantime, the posting about Portrayed Life Expectancy was a very emotional one for me. I had never thought about the life decisions I make for my daughter being affected by a possible shortened life expectancy until recently. My daughter missed so many days of school this past school year with 3 hospitalizations that her home bound instruction will continue through the month of July to catch her up. Meanwhile, she is a gifted child by IQ and placement in her gifted program in her school. I had always assumed she would be in honors classes and attend the college of her choice. She wants to be an Engineer and attend MIT. She has accelerated 2 grades in math at her request. As parents we have taken the position of what she wants in school she must request. So when she wanted to accelerate a grade and then a second grade in math we did not go with her to the principal or the Superintendent, but had her go alone to show this was her decision. So now she was not placed in an honors Englishclass for the fall based on a test she took when she was very ill. I would normally have her go to the principaland request entrance into the class because that is what she wants. </P>
<P>However, her homebound instructor hit a nerve with me. She said well if she is going to miss so much school again then why put in her in a more challenging class with extra projects. How do you handle school decisions with chronically ill children? Do teachers treat them differently? Do you honestly have the same expectations in school for your child with CF and your other children? I want to be realistic regarding my daughter's future, but don't want to hold her back either. </P>

 

[Beccamom]

<P><BR>As many of you know I have an 11 year old that is still in limbo in the diagnositic process for CF. In the meantime, her pulmonologist has begun the "CF treatments" and she is doing much better, but still quite ill. She now has a vest, alubuterol or Xopenex by nebulizer, Singulair, and on her fourth round of oral antibiotics this one for 20 days. She will have bronchcoscopy next month. She has failure to thrive. She is colonized with staph a etc. etc. etc. </P>
<P>In the meantime, the posting about Portrayed Life Expectancy was a very emotional one for me. I had never thought about the life decisions I make for my daughter being affected by a possible shortened life expectancy until recently. My daughter missed so many days of school this past school year with 3 hospitalizations that her home bound instruction will continue through the month of July to catch her up. Meanwhile, she is a gifted child by IQ and placement in her gifted program in her school. I had always assumed she would be in honors classes and attend the college of her choice. She wants to be an Engineer and attend MIT. She has accelerated 2 grades in math at her request. As parents we have taken the position of what she wants in school she must request. So when she wanted to accelerate a grade and then a second grade in math we did not go with her to the principal or the Superintendent, but had her go alone to show this was her decision. So now she was not placed in an honors Englishclass for the fall based on a test she took when she was very ill. I would normally have her go to the principaland request entrance into the class because that is what she wants. </P>
<P>However, her homebound instructor hit a nerve with me. She said well if she is going to miss so much school again then why put in her in a more challenging class with extra projects. How do you handle school decisions with chronically ill children? Do teachers treat them differently? Do you honestly have the same expectations in school for your child with CF and your other children? I want to be realistic regarding my daughter's future, but don't want to hold her back either. </P>

 

[welshwitch]

We all know CF doesn't and should not intelligence. Why let it hold her back? Just make some accomodations. It's the law. I would definitely challenge the teacher who said why put her in a challenging class. CF is no excuse.

My parents had the same high academic expectations for myself as they did for my brother (no CF). The only things that CF affected were I was allowed to stay home from school if I was sick. But I always made up the work. It's about being proactive. Especially if she's good at math and wants to go to MIT--we need more women in math and science!

I went to both a great college and grad school, and now I work full time in the tech industry in Silicon Valley. CF has maybe made me miss a few more days of work than others, but in no way have I ever let it hold me back. If anything, it makes me work harder.

 

[welshwitch]

We all know CF doesn't and should not intelligence. Why let it hold her back? Just make some accomodations. It's the law. I would definitely challenge the teacher who said why put her in a challenging class. CF is no excuse.

My parents had the same high academic expectations for myself as they did for my brother (no CF). The only things that CF affected were I was allowed to stay home from school if I was sick. But I always made up the work. It's about being proactive. Especially if she's good at math and wants to go to MIT--we need more women in math and science!

I went to both a great college and grad school, and now I work full time in the tech industry in Silicon Valley. CF has maybe made me miss a few more days of work than others, but in no way have I ever let it hold me back. If anything, it makes me work harder.

 

[welshwitch]

We all know CF doesn't and should not intelligence. Why let it hold her back? Just make some accomodations. It's the law. I would definitely challenge the teacher who said why put her in a challenging class. CF is no excuse.
<br />
<br />My parents had the same high academic expectations for myself as they did for my brother (no CF). The only things that CF affected were I was allowed to stay home from school if I was sick. But I always made up the work. It's about being proactive. Especially if she's good at math and wants to go to MIT--we need more women in math and science!
<br />
<br />I went to both a great college and grad school, and now I work full time in the tech industry in Silicon Valley. CF has maybe made me miss a few more days of work than others, but in no way have I ever let it hold me back. If anything, it makes me work harder.

 

[Beccamom]

Thank you for adult perspective. It really helps. The teacher made me feel like I am a bad parent for expecting her to do the extra projects, but you are correct my expectations should not change. If I don't suppoort her desire to be in the honors class, then I am lowering my expectations. As parents we have to be advocates medical and educational.

 

[Beccamom]

Thank you for adult perspective. It really helps. The teacher made me feel like I am a bad parent for expecting her to do the extra projects, but you are correct my expectations should not change. If I don't suppoort her desire to be in the honors class, then I am lowering my expectations. As parents we have to be advocates medical and educational.

 

[Beccamom]

Thank you for adult perspective. It really helps. The teacher made me feel like I am a bad parent for expecting her to do the extra projects, but you are correct my expectations should not change. If I don't suppoort her desire to be in the honors class, then I am lowering my expectations. As parents we have to be advocates medical and educational.

 

[chrissyd]

I was sick as a child and teen; but wasn't dx'd until I was 21. People just didn't believe me because often I felt bad but didn't look sick (I'm a chubby CFer). I missed lot of school and b/c I got no assistance from school I barely graduated. Flash forward to now, age 34 and I'm attending University Of Phoenix.

I think you know you daughters potential better than the people (teacher, principal, heck everyone who does not live with a CFer). If she wants to and is able to keep up; then she should be allowed to try and succed rather than being told no. In life it is always better to live with the "I did my best" rather than the "I never tried;" or at least that is how I feel.


Good Luck...

 

[chrissyd]

I was sick as a child and teen; but wasn't dx'd until I was 21. People just didn't believe me because often I felt bad but didn't look sick (I'm a chubby CFer). I missed lot of school and b/c I got no assistance from school I barely graduated. Flash forward to now, age 34 and I'm attending University Of Phoenix.

I think you know you daughters potential better than the people (teacher, principal, heck everyone who does not live with a CFer). If she wants to and is able to keep up; then she should be allowed to try and succed rather than being told no. In life it is always better to live with the "I did my best" rather than the "I never tried;" or at least that is how I feel.


Good Luck...

 

[chrissyd]

I was sick as a child and teen; but wasn't dx'd until I was 21. People just didn't believe me because often I felt bad but didn't look sick (I'm a chubby CFer). I missed lot of school and b/c I got no assistance from school I barely graduated. Flash forward to now, age 34 and I'm attending University Of Phoenix.
<br />
<br />I think you know you daughters potential better than the people (teacher, principal, heck everyone who does not live with a CFer). If she wants to and is able to keep up; then she should be allowed to try and succed rather than being told no. In life it is always better to live with the "I did my best" rather than the "I never tried;" or at least that is how I feel.
<br />
<br />
<br />Good Luck...

 

[Mommafirst]

No matter what the statistics are, we owe it to our kids to continue to challenge them. It sounds like your daughter would be quite bored if you didn't allow her to keep moving forward and challenging herself. No, we don't know what the future holds in way of health, and that is a source of great stress and fear as parents. But I think its essential to help them live to their greatest capacity. And for an exceptionally bright child, like yours, that means facilitating greater knowledge!!!

Sounds like you are making great decisions. Keep it up!!!

 

[Mommafirst]

No matter what the statistics are, we owe it to our kids to continue to challenge them. It sounds like your daughter would be quite bored if you didn't allow her to keep moving forward and challenging herself. No, we don't know what the future holds in way of health, and that is a source of great stress and fear as parents. But I think its essential to help them live to their greatest capacity. And for an exceptionally bright child, like yours, that means facilitating greater knowledge!!!

Sounds like you are making great decisions. Keep it up!!!

 

[Mommafirst]

No matter what the statistics are, we owe it to our kids to continue to challenge them. It sounds like your daughter would be quite bored if you didn't allow her to keep moving forward and challenging herself. No, we don't know what the future holds in way of health, and that is a source of great stress and fear as parents. But I think its essential to help them live to their greatest capacity. And for an exceptionally bright child, like yours, that means facilitating greater knowledge!!!
<br />
<br />Sounds like you are making great decisions. Keep it up!!!

 

[just1more]

I personally am big on quality of life. If she enjoys school, and likes the challenge go for it.

There is nothing wrong with pushing her to achieve; BUT if/when she is not able to keep up don't forget to give liberal support. I *think* what the teacher was trying to say is why put her in a position to stress over missing school.

If she is going to miss school, she can miss regular classes and have a lot of flexiblity to make up work. If she misses the same days in a honors class, the makeup period will be harder. It is still doable but I expect this is what the teacher was trying to convey.

 

[just1more]

I personally am big on quality of life. If she enjoys school, and likes the challenge go for it.

There is nothing wrong with pushing her to achieve; BUT if/when she is not able to keep up don't forget to give liberal support. I *think* what the teacher was trying to say is why put her in a position to stress over missing school.

If she is going to miss school, she can miss regular classes and have a lot of flexiblity to make up work. If she misses the same days in a honors class, the makeup period will be harder. It is still doable but I expect this is what the teacher was trying to convey.

 

[just1more]

I personally am big on quality of life. If she enjoys school, and likes the challenge go for it.
<br />
<br />There is nothing wrong with pushing her to achieve; BUT if/when she is not able to keep up don't forget to give liberal support. I *think* what the teacher was trying to say is why put her in a position to stress over missing school.
<br />
<br />If she is going to miss school, she can miss regular classes and have a lot of flexiblity to make up work. If she misses the same days in a honors class, the makeup period will be harder. It is still doable but I expect this is what the teacher was trying to convey.

 

[hmw]

Tom makes a good point. This is a HARD position to be in for any parent- considering all of a child's needs, both academic and health, when they have a serious medical condition. We generally have to make many accommodations for them in various plans depending on their needs, whether it be through a 504, IEP or whatever- to accommodate for excessive absences, homebound instruction, prolonged time to make up work, etc.

I would try to make allowances in advance how to handle absences with her advanced classes- rather than try to make up enormous amounts of work when she returns to school, can you pick up work daily for her to work on as she can... I'd also suggest adding an accommodation for her getting copies of class notes for days she is absent to add to the assignments to better aid her in keeping up. I'd also suggest accommodations of extra textbooks for home and not being responsible for making up 'redundant' work (you know, the busywork kids are often given even at this age that does little to actually contribute to their learning process.) She will still need to catch up on things when she returns to school but this should greatly reduce the load.

I would definitely continue to challenge her as much as possibly and raise her with the mindset that her intelligence and drive to excel is a precious, wonderful gift and HERS TO OWN. <img src="i/expressions/face-icon-small-smile.gif" border="0">

On the other hand, it's only part of what makes her who and what she is, and only part of what makes her the unique, amazing child she is... so if limitations and/or disease progression slow her down from achieving a specific goal~ make sure she hasn't had this part of her been her entire identity, and that she knows that she can keep trying, even if she has to go about things a different route than she may have expected. Wishing the best!!

 

[hmw]

Tom makes a good point. This is a HARD position to be in for any parent- considering all of a child's needs, both academic and health, when they have a serious medical condition. We generally have to make many accommodations for them in various plans depending on their needs, whether it be through a 504, IEP or whatever- to accommodate for excessive absences, homebound instruction, prolonged time to make up work, etc.

I would try to make allowances in advance how to handle absences with her advanced classes- rather than try to make up enormous amounts of work when she returns to school, can you pick up work daily for her to work on as she can... I'd also suggest adding an accommodation for her getting copies of class notes for days she is absent to add to the assignments to better aid her in keeping up. I'd also suggest accommodations of extra textbooks for home and not being responsible for making up 'redundant' work (you know, the busywork kids are often given even at this age that does little to actually contribute to their learning process.) She will still need to catch up on things when she returns to school but this should greatly reduce the load.

I would definitely continue to challenge her as much as possibly and raise her with the mindset that her intelligence and drive to excel is a precious, wonderful gift and HERS TO OWN. <img src="i/expressions/face-icon-small-smile.gif" border="0">

On the other hand, it's only part of what makes her who and what she is, and only part of what makes her the unique, amazing child she is... so if limitations and/or disease progression slow her down from achieving a specific goal~ make sure she hasn't had this part of her been her entire identity, and that she knows that she can keep trying, even if she has to go about things a different route than she may have expected. Wishing the best!!