Portrayed Life Expectancy Affecting Life Decisions

imported_Momto2 · Jul 21, 2011

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 : )

imported_Momto2 · Jul 21, 2011

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 : )

PatrickM · Jul 22, 2011

Hi Becca's Mom,

I have a 14 year old with CF and he will be entering high school next fall. In middle school he was chronically absent and it was so difficult for him academically and socially. He spent three years with a 504, that was not followed and I spent more time and energy at that school reminding them of their obligation to educate him given his medical needs. It is difficult to convey in words how frustrating and stressful it was for us because there was always one teacher who assigned too much work upon his return to school, or who wanted him to be kept in from recess or lunch to make up work. The thing was he could never make up all the work, and then he would get sick again and the cycle just started all over again. The final straw for me was when I told the director of special ed I was concerned about how he would manage his work load in high school, and she told me he might want to consider going to high school over 5 years. College over an extended time period is one thing but high school? I should also mention my son is very bright, not gifted, but an honors student and a hard worker.

Anyway, I would highly recommend getting evaluated for an IEP. You have to request this in writing and then by law they need to do an evaluation. I hired an educational advocate , if you are able it was the best thing I ever did. You may even be able to get one appointed for you if cost is an issue. There are 2 parts to an IEP , PLEP A and PLEP B. PLEP B considers more how a disability can effect your educational needs. (I think this is correct, thus my need for the ed advocate). They don't like to call it a medical IEP because they will tell you a 504 will cover anything you need, but in my experience it did not. An IEP carries much more weight legally, so they stick to it.

My son gained so much from the IEP. He has "in school" tutoring 4x a week which is key for him. They excused him from music and an elective to find the school time. He also has a case manager who is responsible for helping him and his teachers prioritize/modify work when he is absent. He will have assistive technology so he can follow along with the class when he is absent, modified work load, he can take tests in with the tutor, he has access to a shortened school day if he needs it, and he has accommodations for standardized tests. If you can get nothing else, at least try to get scheduled in school tutoring. When you are absent a lot you miss so much class instruction and this is very helpful.

I wish you the best and if I can help you at all with the IEP stuff PM me and I will give you my phone number.

Also for what it is worth I totally agree, if your daughter should be in an accelerated class and she wants to, then do it. She can still learn the more difficult material and have a modified work load. This is the thing teachers have such a hard time with and i don't understand why. Just skip the "busy" work if she is not feeling well and make sure she gets the main concepts. Algebra is algebra, maybe she doesn't need to do 30 practice problems but 10, as long as she gets the concept, that should be the main goal.

Tara

PatrickM · Jul 22, 2011

Hi Becca's Mom,

I have a 14 year old with CF and he will be entering high school next fall. In middle school he was chronically absent and it was so difficult for him academically and socially. He spent three years with a 504, that was not followed and I spent more time and energy at that school reminding them of their obligation to educate him given his medical needs. It is difficult to convey in words how frustrating and stressful it was for us because there was always one teacher who assigned too much work upon his return to school, or who wanted him to be kept in from recess or lunch to make up work. The thing was he could never make up all the work, and then he would get sick again and the cycle just started all over again. The final straw for me was when I told the director of special ed I was concerned about how he would manage his work load in high school, and she told me he might want to consider going to high school over 5 years. College over an extended time period is one thing but high school? I should also mention my son is very bright, not gifted, but an honors student and a hard worker.

Anyway, I would highly recommend getting evaluated for an IEP. You have to request this in writing and then by law they need to do an evaluation. I hired an educational advocate , if you are able it was the best thing I ever did. You may even be able to get one appointed for you if cost is an issue. There are 2 parts to an IEP , PLEP A and PLEP B. PLEP B considers more how a disability can effect your educational needs. (I think this is correct, thus my need for the ed advocate). They don't like to call it a medical IEP because they will tell you a 504 will cover anything you need, but in my experience it did not. An IEP carries much more weight legally, so they stick to it.

My son gained so much from the IEP. He has "in school" tutoring 4x a week which is key for him. They excused him from music and an elective to find the school time. He also has a case manager who is responsible for helping him and his teachers prioritize/modify work when he is absent. He will have assistive technology so he can follow along with the class when he is absent, modified work load, he can take tests in with the tutor, he has access to a shortened school day if he needs it, and he has accommodations for standardized tests. If you can get nothing else, at least try to get scheduled in school tutoring. When you are absent a lot you miss so much class instruction and this is very helpful.

I wish you the best and if I can help you at all with the IEP stuff PM me and I will give you my phone number.

Also for what it is worth I totally agree, if your daughter should be in an accelerated class and she wants to, then do it. She can still learn the more difficult material and have a modified work load. This is the thing teachers have such a hard time with and i don't understand why. Just skip the "busy" work if she is not feeling well and make sure she gets the main concepts. Algebra is algebra, maybe she doesn't need to do 30 practice problems but 10, as long as she gets the concept, that should be the main goal.

Tara

PatrickM · Jul 22, 2011

Hi Becca's Mom,
 
 I have a 14 year old with CF and he will be entering high school next fall. In middle school he was chronically absent and it was so difficult for him academically and socially. He spent three years with a 504, that was not followed and I spent more time and energy at that school reminding them of their obligation to educate him given his medical needs. It is difficult to convey in words how frustrating and stressful it was for us because there was always one teacher who assigned too much work upon his return to school, or who wanted him to be kept in from recess or lunch to make up work. The thing was he could never make up all the work, and then he would get sick again and the cycle just started all over again. The final straw for me was when I told the director of special ed I was concerned about how he would manage his work load in high school, and she told me he might want to consider going to high school over 5 years. College over an extended time period is one thing but high school? I should also mention my son is very bright, not gifted, but an honors student and a hard worker.
 
 Anyway, I would highly recommend getting evaluated for an IEP. You have to request this in writing and then by law they need to do an evaluation. I hired an educational advocate , if you are able it was the best thing I ever did. You may even be able to get one appointed for you if cost is an issue. There are 2 parts to an IEP , PLEP A and PLEP B. PLEP B considers more how a disability can effect your educational needs. (I think this is correct, thus my need for the ed advocate). They don't like to call it a medical IEP because they will tell you a 504 will cover anything you need, but in my experience it did not. An IEP carries much more weight legally, so they stick to it.
 
 My son gained so much from the IEP. He has "in school" tutoring 4x a week which is key for him. They excused him from music and an elective to find the school time. He also has a case manager who is responsible for helping him and his teachers prioritize/modify work when he is absent. He will have assistive technology so he can follow along with the class when he is absent, modified work load, he can take tests in with the tutor, he has access to a shortened school day if he needs it, and he has accommodations for standardized tests. If you can get nothing else, at least try to get scheduled in school tutoring. When you are absent a lot you miss so much class instruction and this is very helpful.
 
 I wish you the best and if I can help you at all with the IEP stuff PM me and I will give you my phone number.
 
 Also for what it is worth I totally agree, if your daughter should be in an accelerated class and she wants to, then do it. She can still learn the more difficult material and have a modified work load. This is the thing teachers have such a hard time with and i don't understand why. Just skip the "busy" work if she is not feeling well and make sure she gets the main concepts. Algebra is algebra, maybe she doesn't need to do 30 practice problems but 10, as long as she gets the concept, that should be the main goal.
 
 Tara

Beccamom · Jul 22, 2011

Tara thank you for your post. It seem like my daughter's experience in school is a common problem. I am struggling with the idea of an IEP. At the very least I am getting ideas of things to add to her 504 plan even if we do not pursue and IEP. We need more specific information about what make-up work will be done. Who is the case manager who was responsible for helping him prioritize/modify work when he is absent. I feel like second to medical research trying to find appropriate treatment and diagnosis for my daughter i spend the majority of my time this past school year as her "case manager". I also work full time, was in school part time for a post-master's degree certification, and have a 2nd child with her own medical issues. I would love to pass on that responsibility to someone at the school.

I had so many laugh or cry moments with the school this year. One moment I chose to laugh about was a social studies teacher who sent home a 40 page packet for my daughter to fill out and study from to take her make-up test the next day. The directions included coloring the packet. I wrote a note to the teacher that I really needed a good laugh and the coloring suggestion had me in stitches. I don't know if she thought it was as funny as I did.

We had a very negative experience with our state this school year. My daughter was in the hospital the week before our statewide assessment. The week of the assessment she wasn't in school still recovering and lots of follow-up doctor appointments. Her pulmonologist wrote a letter to excuse her from the exam because she has virtually no measurable cortisol and he fealt her body would not be able to handle the stress of the exam. He also wrote that she had doctor appointments that would cause her to be late or leave school early the week of the make-up exam. The school district had no problem with her missing the exam. The state rejected her missing the exam because if she was in school during the make-up she had to take the make-up. That would have caused her to miss another full week of school. She did not take the test in the end, but how crazy for the state to reject the doctor's note.

Does your son always get the in school tutoring or just when he needs to do make-up work? Can you give me more details about what to ask for?

Thanks for your help.
Jen

Beccamom · Jul 22, 2011

Tara thank you for your post. It seem like my daughter's experience in school is a common problem. I am struggling with the idea of an IEP. At the very least I am getting ideas of things to add to her 504 plan even if we do not pursue and IEP. We need more specific information about what make-up work will be done. Who is the case manager who was responsible for helping him prioritize/modify work when he is absent. I feel like second to medical research trying to find appropriate treatment and diagnosis for my daughter i spend the majority of my time this past school year as her "case manager". I also work full time, was in school part time for a post-master's degree certification, and have a 2nd child with her own medical issues. I would love to pass on that responsibility to someone at the school.

I had so many laugh or cry moments with the school this year. One moment I chose to laugh about was a social studies teacher who sent home a 40 page packet for my daughter to fill out and study from to take her make-up test the next day. The directions included coloring the packet. I wrote a note to the teacher that I really needed a good laugh and the coloring suggestion had me in stitches. I don't know if she thought it was as funny as I did.

We had a very negative experience with our state this school year. My daughter was in the hospital the week before our statewide assessment. The week of the assessment she wasn't in school still recovering and lots of follow-up doctor appointments. Her pulmonologist wrote a letter to excuse her from the exam because she has virtually no measurable cortisol and he fealt her body would not be able to handle the stress of the exam. He also wrote that she had doctor appointments that would cause her to be late or leave school early the week of the make-up exam. The school district had no problem with her missing the exam. The state rejected her missing the exam because if she was in school during the make-up she had to take the make-up. That would have caused her to miss another full week of school. She did not take the test in the end, but how crazy for the state to reject the doctor's note.

Does your son always get the in school tutoring or just when he needs to do make-up work? Can you give me more details about what to ask for?

Thanks for your help.
Jen

Beccamom · Jul 22, 2011

Tara thank you for your post. It seem like my daughter's experience in school is a common problem. I am struggling with the idea of an IEP. At the very least I am getting ideas of things to add to her 504 plan even if we do not pursue and IEP. We need more specific information about what make-up work will be done. Who is the case manager who was responsible for helping him prioritize/modify work when he is absent. I feel like second to medical research trying to find appropriate treatment and diagnosis for my daughter i spend the majority of my time this past school year as her "case manager". I also work full time, was in school part time for a post-master's degree certification, and have a 2nd child with her own medical issues. I would love to pass on that responsibility to someone at the school.
 
 I had so many laugh or cry moments with the school this year. One moment I chose to laugh about was a social studies teacher who sent home a 40 page packet for my daughter to fill out and study from to take her make-up test the next day. The directions included coloring the packet. I wrote a note to the teacher that I really needed a good laugh and the coloring suggestion had me in stitches. I don't know if she thought it was as funny as I did.
 
 We had a very negative experience with our state this school year. My daughter was in the hospital the week before our statewide assessment. The week of the assessment she wasn't in school still recovering and lots of follow-up doctor appointments. Her pulmonologist wrote a letter to excuse her from the exam because she has virtually no measurable cortisol and he fealt her body would not be able to handle the stress of the exam. He also wrote that she had doctor appointments that would cause her to be late or leave school early the week of the make-up exam. The school district had no problem with her missing the exam. The state rejected her missing the exam because if she was in school during the make-up she had to take the make-up. That would have caused her to miss another full week of school. She did not take the test in the end, but how crazy for the state to reject the doctor's note.
 
 Does your son always get the in school tutoring or just when he needs to do make-up work? Can you give me more details about what to ask for?
 
 Thanks for your help.
 Jen

PatrickM · Jul 22, 2011

Jen,

I totally understand how you feel about being a case manager. Honestly we went through 3 years of this and had so many experiences like you describe with the social studies teacher. In 7th grade at one point I pulled him out of school and said I will teach him myself. During that time we had our state exams, we are in Massachusetts so we had MCAS and the school called me and told me he had to take it, THAT DAY! This is after he was home with me for a month! I literally told him to write his name on the exam and said he could leave the rest blank. He is a conscientious student so he didn't do that, but he did not score well. My feeling was it serves the district right, let's bring down the town's MCAS scores. ;-) Then when he returned to school and took the math MCAS he scored in the above average range. My husband did all the home schooling on the math, it was my son's best score yet, go figure. I never continued with the homeschooling because my son is very social and really missed being around kids.

You should start with a more detailed 504. I think we got the IEP because the school failed to provide so much for my son. I think they were afraid I would take them to court or something. That isn't my style but if I needed to get him services who knows. Fortunately it never came to that. So at least if you start with a 504, and worst case they don't do what they say they are going to do, you can document that. Write everything down and save all e-mails. If you ever need to go to the school and challenge them, once they know you keep good notes they get nervous.

Beginning in 8th grade, actually after I requested the IEP, they said he could receive in school tutoring. I also got a Physicians Statement form signed where our MD wrote he would have over 14 days of absences and would benefit from in school as well as home tutoring. Check to see what the equivalent of the Physicians Statement for New Jersey is.

The IEP process takes several months and we only signed it in June. They did however for most of 8th grade give him all the services I mentioned. He was tutored in the special ed office. They have this whole area of the school I never knew about where these great special ed teachers and aides are. They tutor kids with dyslexia, anxiety disorders, learning disabilities,etc. It turned out my son knew a lot of the kids that spent time there and he was fine with it. I wondered if he might not like the language of special ed, he is in 8th grade, doesn't want to stand out any more than he already does with his absences, etc, but he was fine with it. There was one aide who was assigned to be his "case manager". Now a case manager was also assigned in 7th grade but that was a math teacher. The special ed teachers are so much better equipped to deal with this stuff. This sped teacher was so responsible and when he would miss science labs for example she would do a shortened version of the lab with him. If he understood the lab they would move on. She really served as our liaison with the school in terms of what work could be excused and what was necessary for him to learn. It was very hard for me to always be asking teachers to excuse him from work (such as coloring projects in 6th grade). My personality is more like, this is due, lets get it done. That ended up being very stressful for him though. It was a vicious cycle of make up, being absent, make up, being absent. This is not even taking in to consideration the socialization he missed out on and the stress of reintegrating . Also I can't tell you how many times he would go back to school after being out and have to take a test on stuff no one ever taught him! He takes a lot of pride in his work and it was really hard for him.

So back to your question, yes right now he is scheduled for 4x a week in school tutoring. He needed to give up a free period and an elective for high school to fit this in, but I am fine with that. Ask your school if you can have in school tutoring. Call the special education office and ask them about in school tutoring. The administrator for special ed is the one who told me he could go to high school for 5 years. The coordinator for student services was more helpful but again, this was after the formal request for an IEP. I also think once educational advocates get involved the school knows they are dealing with someone who knows what they are talking about and they are more accommodating. You need someone with knowledge guiding you. You could also go to the superintendent. When we were going through the IEP process I had to meet with the school social worker and tell why I was requesting the IEP. She was actually appalled at what my son went through at school and asked me did you ever go to the superintendent? That might have brought about change earlier if I had, it never occurred to me. I was in constant communication with the principal but while she may have meant well, she never did anything at all, she was useless. How many days was your daughter absent last year? How many hours of home tutoring did she receive? It would seem more cost effective to do the tutoring in school and better for the student. The kids pick stuff up so fast 1-1.

The special ed office should be open in the summer. The sooner you can get all this at least being talked about the better.

Anything else I can help with don't hesitate to ask.

Tara

PatrickM · Jul 22, 2011

Jen,

I totally understand how you feel about being a case manager. Honestly we went through 3 years of this and had so many experiences like you describe with the social studies teacher. In 7th grade at one point I pulled him out of school and said I will teach him myself. During that time we had our state exams, we are in Massachusetts so we had MCAS and the school called me and told me he had to take it, THAT DAY! This is after he was home with me for a month! I literally told him to write his name on the exam and said he could leave the rest blank. He is a conscientious student so he didn't do that, but he did not score well. My feeling was it serves the district right, let's bring down the town's MCAS scores. ;-) Then when he returned to school and took the math MCAS he scored in the above average range. My husband did all the home schooling on the math, it was my son's best score yet, go figure. I never continued with the homeschooling because my son is very social and really missed being around kids.

You should start with a more detailed 504. I think we got the IEP because the school failed to provide so much for my son. I think they were afraid I would take them to court or something. That isn't my style but if I needed to get him services who knows. Fortunately it never came to that. So at least if you start with a 504, and worst case they don't do what they say they are going to do, you can document that. Write everything down and save all e-mails. If you ever need to go to the school and challenge them, once they know you keep good notes they get nervous.

Beginning in 8th grade, actually after I requested the IEP, they said he could receive in school tutoring. I also got a Physicians Statement form signed where our MD wrote he would have over 14 days of absences and would benefit from in school as well as home tutoring. Check to see what the equivalent of the Physicians Statement for New Jersey is.

The IEP process takes several months and we only signed it in June. They did however for most of 8th grade give him all the services I mentioned. He was tutored in the special ed office. They have this whole area of the school I never knew about where these great special ed teachers and aides are. They tutor kids with dyslexia, anxiety disorders, learning disabilities,etc. It turned out my son knew a lot of the kids that spent time there and he was fine with it. I wondered if he might not like the language of special ed, he is in 8th grade, doesn't want to stand out any more than he already does with his absences, etc, but he was fine with it. There was one aide who was assigned to be his "case manager". Now a case manager was also assigned in 7th grade but that was a math teacher. The special ed teachers are so much better equipped to deal with this stuff. This sped teacher was so responsible and when he would miss science labs for example she would do a shortened version of the lab with him. If he understood the lab they would move on. She really served as our liaison with the school in terms of what work could be excused and what was necessary for him to learn. It was very hard for me to always be asking teachers to excuse him from work (such as coloring projects in 6th grade). My personality is more like, this is due, lets get it done. That ended up being very stressful for him though. It was a vicious cycle of make up, being absent, make up, being absent. This is not even taking in to consideration the socialization he missed out on and the stress of reintegrating . Also I can't tell you how many times he would go back to school after being out and have to take a test on stuff no one ever taught him! He takes a lot of pride in his work and it was really hard for him.

So back to your question, yes right now he is scheduled for 4x a week in school tutoring. He needed to give up a free period and an elective for high school to fit this in, but I am fine with that. Ask your school if you can have in school tutoring. Call the special education office and ask them about in school tutoring. The administrator for special ed is the one who told me he could go to high school for 5 years. The coordinator for student services was more helpful but again, this was after the formal request for an IEP. I also think once educational advocates get involved the school knows they are dealing with someone who knows what they are talking about and they are more accommodating. You need someone with knowledge guiding you. You could also go to the superintendent. When we were going through the IEP process I had to meet with the school social worker and tell why I was requesting the IEP. She was actually appalled at what my son went through at school and asked me did you ever go to the superintendent? That might have brought about change earlier if I had, it never occurred to me. I was in constant communication with the principal but while she may have meant well, she never did anything at all, she was useless. How many days was your daughter absent last year? How many hours of home tutoring did she receive? It would seem more cost effective to do the tutoring in school and better for the student. The kids pick stuff up so fast 1-1.

The special ed office should be open in the summer. The sooner you can get all this at least being talked about the better.

Anything else I can help with don't hesitate to ask.

Tara

PatrickM · Jul 22, 2011

Jen,
 
 I totally understand how you feel about being a case manager. Honestly we went through 3 years of this and had so many experiences like you describe with the social studies teacher. In 7th grade at one point I pulled him out of school and said I will teach him myself. During that time we had our state exams, we are in Massachusetts so we had MCAS and the school called me and told me he had to take it, THAT DAY! This is after he was home with me for a month! I literally told him to write his name on the exam and said he could leave the rest blank. He is a conscientious student so he didn't do that, but he did not score well. My feeling was it serves the district right, let's bring down the town's MCAS scores. ;-) Then when he returned to school and took the math MCAS he scored in the above average range. My husband did all the home schooling on the math, it was my son's best score yet, go figure. I never continued with the homeschooling because my son is very social and really missed being around kids.
 
 You should start with a more detailed 504. I think we got the IEP because the school failed to provide so much for my son. I think they were afraid I would take them to court or something. That isn't my style but if I needed to get him services who knows. Fortunately it never came to that. So at least if you start with a 504, and worst case they don't do what they say they are going to do, you can document that. Write everything down and save all e-mails. If you ever need to go to the school and challenge them, once they know you keep good notes they get nervous.
 
 Beginning in 8th grade, actually after I requested the IEP, they said he could receive in school tutoring. I also got a Physicians Statement form signed where our MD wrote he would have over 14 days of absences and would benefit from in school as well as home tutoring. Check to see what the equivalent of the Physicians Statement for New Jersey is.
 
 The IEP process takes several months and we only signed it in June. They did however for most of 8th grade give him all the services I mentioned. He was tutored in the special ed office. They have this whole area of the school I never knew about where these great special ed teachers and aides are. They tutor kids with dyslexia, anxiety disorders, learning disabilities,etc. It turned out my son knew a lot of the kids that spent time there and he was fine with it. I wondered if he might not like the language of special ed, he is in 8th grade, doesn't want to stand out any more than he already does with his absences, etc, but he was fine with it. There was one aide who was assigned to be his "case manager". Now a case manager was also assigned in 7th grade but that was a math teacher. The special ed teachers are so much better equipped to deal with this stuff. This sped teacher was so responsible and when he would miss science labs for example she would do a shortened version of the lab with him. If he understood the lab they would move on. She really served as our liaison with the school in terms of what work could be excused and what was necessary for him to learn. It was very hard for me to always be asking teachers to excuse him from work (such as coloring projects in 6th grade). My personality is more like, this is due, lets get it done. That ended up being very stressful for him though. It was a vicious cycle of make up, being absent, make up, being absent. This is not even taking in to consideration the socialization he missed out on and the stress of reintegrating . Also I can't tell you how many times he would go back to school after being out and have to take a test on stuff no one ever taught him! He takes a lot of pride in his work and it was really hard for him.
 
 So back to your question, yes right now he is scheduled for 4x a week in school tutoring. He needed to give up a free period and an elective for high school to fit this in, but I am fine with that. Ask your school if you can have in school tutoring. Call the special education office and ask them about in school tutoring. The administrator for special ed is the one who told me he could go to high school for 5 years. The coordinator for student services was more helpful but again, this was after the formal request for an IEP. I also think once educational advocates get involved the school knows they are dealing with someone who knows what they are talking about and they are more accommodating. You need someone with knowledge guiding you. You could also go to the superintendent. When we were going through the IEP process I had to meet with the school social worker and tell why I was requesting the IEP. She was actually appalled at what my son went through at school and asked me did you ever go to the superintendent? That might have brought about change earlier if I had, it never occurred to me. I was in constant communication with the principal but while she may have meant well, she never did anything at all, she was useless. How many days was your daughter absent last year? How many hours of home tutoring did she receive? It would seem more cost effective to do the tutoring in school and better for the student. The kids pick stuff up so fast 1-1.
 
 The special ed office should be open in the summer. The sooner you can get all this at least being talked about the better.
 
 Anything else I can help with don't hesitate to ask.
 
 Tara

Beccamom · Jul 23, 2011

Tara,

Thank you for your suggestions. I am working now with the head of the child study team and she has been wonderful so far. My daughter missed 30 plusfull days and then at least as many half days for doctor appointments. She got 1 hour homebound for each full day and 1/2 for full days, but most of the hours were after school ended. She is also a conscientious student and she is very fortunate to learn very easily. Her language arts teacher would give her the tests without the lesson and she had 100, 102, 100, and 99% averages so the teacher was more than cold with me at the end of the year when I demanded she get the homebound hours she was entitled to and stated language arts was my biggest concern. Basically from 4th to 6th grade my daughter only made 1 years progress. Talking to reading specialists if all you do is read for 3 years without any instruction you would make a years progress in reading level and this is what happened to my daughter. I want her to be educated, not just passed to the next grade. I will ask for a case manager to be assigned to her to help Rebecca organize missed work.
best wishes for a smooth school your for you

Beccamom · Jul 23, 2011

Tara,

Thank you for your suggestions. I am working now with the head of the child study team and she has been wonderful so far. My daughter missed 30 plusfull days and then at least as many half days for doctor appointments. She got 1 hour homebound for each full day and 1/2 for full days, but most of the hours were after school ended. She is also a conscientious student and she is very fortunate to learn very easily. Her language arts teacher would give her the tests without the lesson and she had 100, 102, 100, and 99% averages so the teacher was more than cold with me at the end of the year when I demanded she get the homebound hours she was entitled to and stated language arts was my biggest concern. Basically from 4th to 6th grade my daughter only made 1 years progress. Talking to reading specialists if all you do is read for 3 years without any instruction you would make a years progress in reading level and this is what happened to my daughter. I want her to be educated, not just passed to the next grade. I will ask for a case manager to be assigned to her to help Rebecca organize missed work.
best wishes for a smooth school your for you

Beccamom · Jul 23, 2011

Tara,
 
 Thank you for your suggestions. I am working now with the head of the child study team and she has been wonderful so far. My daughter missed 30 plusfull days and then at least as many half days for doctor appointments. She got 1 hour homebound for each full day and 1/2 for full days, but most of the hours were after school ended. She is also a conscientious student and she is very fortunate to learn very easily. Her language arts teacher would give her the tests without the lesson and she had 100, 102, 100, and 99% averages so the teacher was more than cold with me at the end of the year when I demanded she get the homebound hours she was entitled to and stated language arts was my biggest concern. Basically from 4th to 6th grade my daughter only made 1 years progress. Talking to reading specialists if all you do is read for 3 years without any instruction you would make a years progress in reading level and this is what happened to my daughter. I want her to be educated, not just passed to the next grade. I will ask for a case manager to be assigned to her to help Rebecca organize missed work.
 best wishes for a smooth school your for you

Mistyjo · Jul 23, 2011

I am so grateful I found this board. My daughter is going into kindergarten this year and now i at least have options if she starts missing a lot of school. How old or what grade was your child in when they started to miss a lot of school? My oldest misses a lot every year b/c of her severe reflux and has gone past the allotted amount of days but not as much as some of your kids have missed. If Jasey starts missing a lot I need to know how to handle it. I know I will be coming to this board for help!

Mistyjo · Jul 23, 2011

I am so grateful I found this board. My daughter is going into kindergarten this year and now i at least have options if she starts missing a lot of school. How old or what grade was your child in when they started to miss a lot of school? My oldest misses a lot every year b/c of her severe reflux and has gone past the allotted amount of days but not as much as some of your kids have missed. If Jasey starts missing a lot I need to know how to handle it. I know I will be coming to this board for help!

Mistyjo · Jul 23, 2011

I am so grateful I found this board. My daughter is going into kindergarten this year and now i at least have options if she starts missing a lot of school. How old or what grade was your child in when they started to miss a lot of school? My oldest misses a lot every year b/c of her severe reflux and has gone past the allotted amount of days but not as much as some of your kids have missed. If Jasey starts missing a lot I need to know how to handle it. I know I will be coming to this board for help!

hmw · Jul 23, 2011

<div class="FTQUOTE"><begin quote>How old or what grade was your child in when they started to miss a lot of school?</end quote></div>

It will vary a great deal when they start missing a lot of school... if they have limited disease involvement, they won't miss any more school than the average child. Emily started missing a LOT of school in 1st grade~ prior to her CF dx, not treating her appropriately, and she was constantly sick. 2nd grade was actually better~ with appropriate treatment, the times she was sick she missed more time due to the need to be doing tx allll day long, but she had longer stretches of healthy time in between.

4th grade was awful, between repeated bouts of DIOS, several bad exacerbations culminating in a hospital stay and a 3wk course of IV's, lots of appts and procedures that also necessitated missing school. Sickness means a lot of missed school even when starting to get better due to a rigorous sick plan of 4tx/day and no way to fit that in around school- the kid's got to sleep, esp when getting over illness, and we've learned the hard way that NOT following sick plan really slows down her recovery process. She ended up needing homebound instruction and one on one tutoring when she was at school in order to try and keep up/recoup any lost skills. I hope this year will be better! She's done much better- better than we've seen in over a year- since doing the IV's and adding hypersal, so hopefully this continues.

<div class="FTQUOTE"><begin quote>If Jasey starts missing a lot I need to know how to handle it.</end quote></div>
Basically, you cannot leave it to chance. Have a meeting with his teacher and any other necessary staff and get accommodations in WRITING excusing him from official attendance policies (don't just assume they will be nice about it.) Get a letter from cf clinic stipulating to what type of accommodations cf kids need ~ generally attendance and the need to fully recover from illness will be on there. You'll need a letter officially confirming his dx for the health plan anyway. And get in writing how to handle things should he start to fall behind and how to make up missed work. This will be less of an issue in Kindergarten than it will be in future years, but this is good practice... and K is when they start laying the foundation for reading, writing and math facts, so the learning process even at this age cannot be discounted.

hmw · Jul 23, 2011

<div class="FTQUOTE"><begin quote>How old or what grade was your child in when they started to miss a lot of school?</end quote>

It will vary a great deal when they start missing a lot of school... if they have limited disease involvement, they won't miss any more school than the average child. Emily started missing a LOT of school in 1st grade~ prior to her CF dx, not treating her appropriately, and she was constantly sick. 2nd grade was actually better~ with appropriate treatment, the times she was sick she missed more time due to the need to be doing tx allll day long, but she had longer stretches of healthy time in between.

4th grade was awful, between repeated bouts of DIOS, several bad exacerbations culminating in a hospital stay and a 3wk course of IV's, lots of appts and procedures that also necessitated missing school. Sickness means a lot of missed school even when starting to get better due to a rigorous sick plan of 4tx/day and no way to fit that in around school- the kid's got to sleep, esp when getting over illness, and we've learned the hard way that NOT following sick plan really slows down her recovery process. She ended up needing homebound instruction and one on one tutoring when she was at school in order to try and keep up/recoup any lost skills. I hope this year will be better! She's done much better- better than we've seen in over a year- since doing the IV's and adding hypersal, so hopefully this continues.

<div class="FTQUOTE"><begin quote>If Jasey starts missing a lot I need to know how to handle it.</end quote>
Basically, you cannot leave it to chance. Have a meeting with his teacher and any other necessary staff and get accommodations in WRITING excusing him from official attendance policies (don't just assume they will be nice about it.) Get a letter from cf clinic stipulating to what type of accommodations cf kids need ~ generally attendance and the need to fully recover from illness will be on there. You'll need a letter officially confirming his dx for the health plan anyway. And get in writing how to handle things should he start to fall behind and how to make up missed work. This will be less of an issue in Kindergarten than it will be in future years, but this is good practice... and K is when they start laying the foundation for reading, writing and math facts, so the learning process even at this age cannot be discounted.

hmw · Jul 23, 2011

<div class="FTQUOTE"><begin quote>How old or what grade was your child in when they started to miss a lot of school?</end quote>
 
 It will vary a great deal when they start missing a lot of school... if they have limited disease involvement, they won't miss any more school than the average child. Emily started missing a LOT of school in 1st grade~ prior to her CF dx, not treating her appropriately, and she was constantly sick. 2nd grade was actually better~ with appropriate treatment, the times she was sick she missed more time due to the need to be doing tx allll day long, but she had longer stretches of healthy time in between.
 
 4th grade was awful, between repeated bouts of DIOS, several bad exacerbations culminating in a hospital stay and a 3wk course of IV's, lots of appts and procedures that also necessitated missing school. Sickness means a lot of missed school even when starting to get better due to a rigorous sick plan of 4tx/day and no way to fit that in around school- the kid's got to sleep, esp when getting over illness, and we've learned the hard way that NOT following sick plan really slows down her recovery process. She ended up needing homebound instruction and one on one tutoring when she was at school in order to try and keep up/recoup any lost skills. I hope this year will be better! She's done much better- better than we've seen in over a year- since doing the IV's and adding hypersal, so hopefully this continues.
 
 <div class="FTQUOTE"><begin quote>If Jasey starts missing a lot I need to know how to handle it.</end quote>
 Basically, you cannot leave it to chance. Have a meeting with his teacher and any other necessary staff and get accommodations in WRITING excusing him from official attendance policies (don't just assume they will be nice about it.) Get a letter from cf clinic stipulating to what type of accommodations cf kids need ~ generally attendance and the need to fully recover from illness will be on there. You'll need a letter officially confirming his dx for the health plan anyway. And get in writing how to handle things should he start to fall behind and how to make up missed work. This will be less of an issue in Kindergarten than it will be in future years, but this is good practice... and K is when they start laying the foundation for reading, writing and math facts, so the learning process even at this age cannot be discounted.

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