How did you teach your school about CF

[momburchx2]

While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.

1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.

2. If not how would you like someone to assist you?

3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?

4. What has been your biggest hurdle when dealing with the school system?

5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.

Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.

9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.

 

[momburchx2]

While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.

1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.

2. If not how would you like someone to assist you?

3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?

4. What has been your biggest hurdle when dealing with the school system?

5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.

Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.

9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.

 

[momburchx2]

While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.

1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.

2. If not how would you like someone to assist you?

3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?

4. What has been your biggest hurdle when dealing with the school system?

5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.

Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.

9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.

 

[momburchx2]

While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.

1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.

2. If not how would you like someone to assist you?

3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?

4. What has been your biggest hurdle when dealing with the school system?

5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.

Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.

9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.

 

[momburchx2]

While I am waiting for Sam to take his first sweat test I have been reading all of your post and they are inspiring. I am hoping that I can make a difference now. I am currently and educational consultant with Richmond Health education program. We have cunsultants in many clinics that work with terminially or chronically ill children. These consultants go to the school to help write 504 plans and health plans. I am currently at a clinic that just deals with school issues not health. I would like to present an inservice on what parents need and want from an educatational consultant and from the teachers at the hospital. Somethimes it helps when we hear it from a parents perspective. Please give me your good and bad stories of school and long term hospital stays. (We also have teachers that work with the patients to keep them up on school work). So here are my questions.

1. Does your clinic provide someone to help with your school issues such as how CF will affect their school day.

2. If not how would you like someone to assist you?

3. When your child is in the hospital for an extended stay how do you feel about schooling? Are you more concerned with health and want to forget the school work or do you want to keep them up with with the curriculum?

4. What has been your biggest hurdle when dealing with the school system?

5. Anything else that will assist me in creating this presentation. I want to share what you the parents are going through and need. Give me the good the bad and the ugly of school with a chronically ill child. I want to share your experiences so that maybe we can help someone else.

Post or private email. I will not use names or specific stories unless I have your permission. I just want to help others out there like you all have helped me.

9 more days untill our first sweat test, I am getting nervous all over again but know I can face anything with the support from friends. Thank you and no matter what the results I know now I need to step up and make a difference.

 

[TonyaH]

Hi there,

We have yet to develop a 504 or an IEP with Andrew. Even with this recent hospitalization and picc line with infusions at school, we have had no problems. School, both in Michigan, our home state, and North Carolina, our new state, has been very accomodating. I am very involved with school, PTA, committe chairperson, roomparent, etc. and I don't know if that has something to do with it. I know the staff and they know me, which I am sure, makes things easier. But from my experience everyone has been more that willing to help with whatever we need, and understand absences.

CFF affiliated cystic fibrosis clinics all have staff social workers who are able to help with school relations, medication authorizations, instruction of special needs, etc. Because our school has always been very accomodating, I have never needed this kind of help. But it is nice to know it's available.

When we were in the hospital a couple of weeks ago there was a hospital school on the peds floor. Children can attend "school" every day if they wish, and the hospital teacher can communicate with your school teacher for assignments. We were only in for four days so that wasn't necessary. Andrew was able to catch up on his own. But again, it is nice to know that service is available in the future.

It just seems that "all-the-way-around", there is a really good system in place. I know the day may come when I will go ahead and fill out the 504 plan, perhaps if Andrew's absences start to accrue, but for now I really feel like CF staff and school staff make the entire process a very smooth one.

Hope this helps and was what you were looking for!

 

[TonyaH]

Hi there,

We have yet to develop a 504 or an IEP with Andrew. Even with this recent hospitalization and picc line with infusions at school, we have had no problems. School, both in Michigan, our home state, and North Carolina, our new state, has been very accomodating. I am very involved with school, PTA, committe chairperson, roomparent, etc. and I don't know if that has something to do with it. I know the staff and they know me, which I am sure, makes things easier. But from my experience everyone has been more that willing to help with whatever we need, and understand absences.

CFF affiliated cystic fibrosis clinics all have staff social workers who are able to help with school relations, medication authorizations, instruction of special needs, etc. Because our school has always been very accomodating, I have never needed this kind of help. But it is nice to know it's available.

When we were in the hospital a couple of weeks ago there was a hospital school on the peds floor. Children can attend "school" every day if they wish, and the hospital teacher can communicate with your school teacher for assignments. We were only in for four days so that wasn't necessary. Andrew was able to catch up on his own. But again, it is nice to know that service is available in the future.

It just seems that "all-the-way-around", there is a really good system in place. I know the day may come when I will go ahead and fill out the 504 plan, perhaps if Andrew's absences start to accrue, but for now I really feel like CF staff and school staff make the entire process a very smooth one.

Hope this helps and was what you were looking for!

 

[TonyaH]

Hi there,

We have yet to develop a 504 or an IEP with Andrew. Even with this recent hospitalization and picc line with infusions at school, we have had no problems. School, both in Michigan, our home state, and North Carolina, our new state, has been very accomodating. I am very involved with school, PTA, committe chairperson, roomparent, etc. and I don't know if that has something to do with it. I know the staff and they know me, which I am sure, makes things easier. But from my experience everyone has been more that willing to help with whatever we need, and understand absences.

CFF affiliated cystic fibrosis clinics all have staff social workers who are able to help with school relations, medication authorizations, instruction of special needs, etc. Because our school has always been very accomodating, I have never needed this kind of help. But it is nice to know it's available.

When we were in the hospital a couple of weeks ago there was a hospital school on the peds floor. Children can attend "school" every day if they wish, and the hospital teacher can communicate with your school teacher for assignments. We were only in for four days so that wasn't necessary. Andrew was able to catch up on his own. But again, it is nice to know that service is available in the future.

It just seems that "all-the-way-around", there is a really good system in place. I know the day may come when I will go ahead and fill out the 504 plan, perhaps if Andrew's absences start to accrue, but for now I really feel like CF staff and school staff make the entire process a very smooth one.

Hope this helps and was what you were looking for!

 

[TonyaH]

Hi there,

We have yet to develop a 504 or an IEP with Andrew. Even with this recent hospitalization and picc line with infusions at school, we have had no problems. School, both in Michigan, our home state, and North Carolina, our new state, has been very accomodating. I am very involved with school, PTA, committe chairperson, roomparent, etc. and I don't know if that has something to do with it. I know the staff and they know me, which I am sure, makes things easier. But from my experience everyone has been more that willing to help with whatever we need, and understand absences.

CFF affiliated cystic fibrosis clinics all have staff social workers who are able to help with school relations, medication authorizations, instruction of special needs, etc. Because our school has always been very accomodating, I have never needed this kind of help. But it is nice to know it's available.

When we were in the hospital a couple of weeks ago there was a hospital school on the peds floor. Children can attend "school" every day if they wish, and the hospital teacher can communicate with your school teacher for assignments. We were only in for four days so that wasn't necessary. Andrew was able to catch up on his own. But again, it is nice to know that service is available in the future.

It just seems that "all-the-way-around", there is a really good system in place. I know the day may come when I will go ahead and fill out the 504 plan, perhaps if Andrew's absences start to accrue, but for now I really feel like CF staff and school staff make the entire process a very smooth one.

Hope this helps and was what you were looking for!

 

[TonyaH]

Hi there,

We have yet to develop a 504 or an IEP with Andrew. Even with this recent hospitalization and picc line with infusions at school, we have had no problems. School, both in Michigan, our home state, and North Carolina, our new state, has been very accomodating. I am very involved with school, PTA, committe chairperson, roomparent, etc. and I don't know if that has something to do with it. I know the staff and they know me, which I am sure, makes things easier. But from my experience everyone has been more that willing to help with whatever we need, and understand absences.

CFF affiliated cystic fibrosis clinics all have staff social workers who are able to help with school relations, medication authorizations, instruction of special needs, etc. Because our school has always been very accomodating, I have never needed this kind of help. But it is nice to know it's available.

When we were in the hospital a couple of weeks ago there was a hospital school on the peds floor. Children can attend "school" every day if they wish, and the hospital teacher can communicate with your school teacher for assignments. We were only in for four days so that wasn't necessary. Andrew was able to catch up on his own. But again, it is nice to know that service is available in the future.

It just seems that "all-the-way-around", there is a really good system in place. I know the day may come when I will go ahead and fill out the 504 plan, perhaps if Andrew's absences start to accrue, but for now I really feel like CF staff and school staff make the entire process a very smooth one.

Hope this helps and was what you were looking for!