Portrayed Life Expectancy Affecting Life Decisions

[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.
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<br />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.
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<br />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">
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<br />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!!

 

[Beccamom]

Thanks for all of the honest feedback both from parents and adult CFers. My husband and I have decided to discuss this with our daughter and let her decide what she wants for herself. This is how we would have handled the decision if we did not think she had CF, so this is how we should proceed. Being a parents of a chronically ill child is tough and the life expectancy part only adds to the stress.

My DD has had a 504 plan, but we had a very difficult time getting the homebound instruction piece complied with and that is why she is now getting homebound instruction in the summer. Her homebound instructor mentioned requesting a medical IEP verses the medical 504 plan she currenlty has. Do any of you have experience with a medical 504 plan versus a medical IEP. What are the advantages for an IEP verses a 504 plan? Are there disadvantages to having a medical IEP? Does the child have the full academic testing for an IEP? Does the child have to be academically behind to get a medical IEP?

 

[Beccamom]

Thanks for all of the honest feedback both from parents and adult CFers. My husband and I have decided to discuss this with our daughter and let her decide what she wants for herself. This is how we would have handled the decision if we did not think she had CF, so this is how we should proceed. Being a parents of a chronically ill child is tough and the life expectancy part only adds to the stress.

My DD has had a 504 plan, but we had a very difficult time getting the homebound instruction piece complied with and that is why she is now getting homebound instruction in the summer. Her homebound instructor mentioned requesting a medical IEP verses the medical 504 plan she currenlty has. Do any of you have experience with a medical 504 plan versus a medical IEP. What are the advantages for an IEP verses a 504 plan? Are there disadvantages to having a medical IEP? Does the child have the full academic testing for an IEP? Does the child have to be academically behind to get a medical IEP?

 

[Beccamom]

Thanks for all of the honest feedback both from parents and adult CFers. My husband and I have decided to discuss this with our daughter and let her decide what she wants for herself. This is how we would have handled the decision if we did not think she had CF, so this is how we should proceed. Being a parents of a chronically ill child is tough and the life expectancy part only adds to the stress.
<br />
<br />My DD has had a 504 plan, but we had a very difficult time getting the homebound instruction piece complied with and that is why she is now getting homebound instruction in the summer. Her homebound instructor mentioned requesting a medical IEP verses the medical 504 plan she currenlty has. Do any of you have experience with a medical 504 plan versus a medical IEP. What are the advantages for an IEP verses a 504 plan? Are there disadvantages to having a medical IEP? Does the child have the full academic testing for an IEP? Does the child have to be academically behind to get a medical IEP?

 

[Ratatosk]

DS has both; however, his IEP is specifically for speech issues, although the annual meetings do discuss items listed on his 504.

 

[Ratatosk]

DS has both; however, his IEP is specifically for speech issues, although the annual meetings do discuss items listed on his 504.

 

[Ratatosk]

DS has both; however, his IEP is specifically for speech issues, although the annual meetings do discuss items listed on his 504.

 

[hmw]

An IEP can encompass actual academic accommodations, whereas a 504 cannot. A 504 can grant non-academic accommodations to help your child succeed in the school environment. Also worth noting- a child that is GIFTED can get an IEP to help them serve their needs just as one that needs one to receive appropriate special education. I would look into this by requesting in writing a team meeting and academic testing (if she has not already had that.) And then accommodations can be put into place to help her succeed with the programs the school has for this.

My daughter has an IEP with a health plan attached to it, but she needs the IEP for special education, speech therapy and OT. The IEP was DEFINITELY what got her the homebound instruction she needed this past spring, though, even though it was due to her health that it was needed.

 

[hmw]

An IEP can encompass actual academic accommodations, whereas a 504 cannot. A 504 can grant non-academic accommodations to help your child succeed in the school environment. Also worth noting- a child that is GIFTED can get an IEP to help them serve their needs just as one that needs one to receive appropriate special education. I would look into this by requesting in writing a team meeting and academic testing (if she has not already had that.) And then accommodations can be put into place to help her succeed with the programs the school has for this.

My daughter has an IEP with a health plan attached to it, but she needs the IEP for special education, speech therapy and OT. The IEP was DEFINITELY what got her the homebound instruction she needed this past spring, though, even though it was due to her health that it was needed.

 

[hmw]

An IEP can encompass actual academic accommodations, whereas a 504 cannot. A 504 can grant non-academic accommodations to help your child succeed in the school environment. Also worth noting- a child that is GIFTED can get an IEP to help them serve their needs just as one that needs one to receive appropriate special education. I would look into this by requesting in writing a team meeting and academic testing (if she has not already had that.) And then accommodations can be put into place to help her succeed with the programs the school has for this.
<br />
<br />My daughter has an IEP with a health plan attached to it, but she needs the IEP for special education, speech therapy and OT. The IEP was DEFINITELY what got her the homebound instruction she needed this past spring, though, even though it was due to her health that it was needed.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[Beccamom]

Thanks for the feedback. I grew up in PA and the gifted have IEPs , but we live in NJ and gifted kids do not get IEPs. She has had the gifted testing and has been placed in pull out gifted classes since Kindergarten, but in NJ that does not give her an IEP. We have considered moving to PA for that reason. I do think we would have less trouble getting what she needs with an IEP, but I don't know if there is a down side to having an IEP that I am not aware of. Her 504 plan was violated this year and I am not sure how to ensure that does not happen again next year.

 

[hmw]

I would go to <A HREF="http://www.wrightslaw.com">www.wrightslaw.com</A> (one of the best resources out there when it comes to learning about IEP's, 504's, helping our kids w/ disabilities, spec ed, and all related topics!) and then to the link on the sidebar called <A HREF="http://www.yellowpagesforkids.com">www.yellowpagesforkids.com</A> where you will be able to click your state on the map. This will give you a list of available resources in your state when it comes to educational advocates, etc who can help you when it comes to this. It is NOT right that her 504 was violated already and it doesn't speak well for following years. Both 504's and IEP's are legal documents. Depending on what you need, though, IEP's can hold more weight at times. There is no 'down side' to pursuing one IMO.

 

[hmw]

I would go to <A HREF="http://www.wrightslaw.com">www.wrightslaw.com</A> (one of the best resources out there when it comes to learning about IEP's, 504's, helping our kids w/ disabilities, spec ed, and all related topics!) and then to the link on the sidebar called <A HREF="http://www.yellowpagesforkids.com">www.yellowpagesforkids.com</A> where you will be able to click your state on the map. This will give you a list of available resources in your state when it comes to educational advocates, etc who can help you when it comes to this. It is NOT right that her 504 was violated already and it doesn't speak well for following years. Both 504's and IEP's are legal documents. Depending on what you need, though, IEP's can hold more weight at times. There is no 'down side' to pursuing one IMO.

 

[hmw]

I would go to <A HREF="http://www.wrightslaw.com">www.wrightslaw.com</A> (one of the best resources out there when it comes to learning about IEP's, 504's, helping our kids w/ disabilities, spec ed, and all related topics!) and then to the link on the sidebar called <A HREF="http://www.yellowpagesforkids.com">www.yellowpagesforkids.com</A> where you will be able to click your state on the map. This will give you a list of available resources in your state when it comes to educational advocates, etc who can help you when it comes to this. It is NOT right that her 504 was violated already and it doesn't speak well for following years. Both 504's and IEP's are legal documents. Depending on what you need, though, IEP's can hold more weight at times. There is no 'down side' to pursuing one IMO.

 

[imported_Momto2]

If academics are what she loves and enjoys, by all means, let her do it. I missed tons of school as a kid since I was always in the hospital. Didnt much matter academically, because, like your daughter, I was already several grades ahead by the time I was 7 or so. (it DID matter a lot socially however)

Another poster mentioned that having CF doesnt mean your intellectual capacity is reduced. Actually, according to several docs I've talked to, it is the exact opposite. Apparently folks with CF seem to have a much higher than average IQ............ All the best to your daughter : )