I am 80 years of age and I have Cystic Fibrosis. I have been married for 57 years, and I have two College Degrees. I still do three treatments a day and have done so for my entire Cystic Fibrosis life. Often, when speaking with my Cystic Fibrosis Doctors, I remind them that I went to Business School and not Medical School. I tell them that if they need help with the business, I will help them but with medicine, I defer to them. Unless you and/or your husband have, at least, a masters in education, I would suggest that you defer to their expertise.I had posted a week or so ago about the Cf and IQ so my story is in that post
<br />My son tested into Kindergarten early at 4. He has done well in school academically but around 2nd grade I noticed how small he was and with him being sick he would get really frustrated when he missed school cause of all of the catching up. At that time we considered holding him back but decided to wait until after 3rd grade. Well in the mean time he got diagnosed with CF mid way through third, he did finish with an A average but because of all of the doctors appointments and him being sick he spent every evening trying to catch up.. So because of the stress level for him in a lot of areas dealing with a new diagnosis, missing so much school, his treatments which as everyone knows are time consuming we decided to hold him back so he is with his age appropriate class.
<br />This years since he is repeating we tested him for the gifted program. Well the results came back and the schools recommendation is for us to have him jump from 3rd to 4th and have him do 5th grade reading and math along with the gifted they came to that recommendation based only on his IQ.
<br />My husband and I decided that it is best for him to stay in third but to challenge him with gifted in 3rd and 4th grade reading and math (which is called enrichment program.
<br />I just got a letter from the school saying if we don't take there full recommendation by moving him up a grade then they will not do anything with him just leave him in 3rrd with no challenges. I am completely shocked. I was told that if I want anything different I needed to go through mediation and the get an attorney for a hearing.
<br />They will not consider Luke as an individual they are just looking at the test. They know he has CF he has a 504 plan at the school he has missed more than 20 days of school and we are just finishing up the second month. So now we have to pay for an attorney for my son to be able to have to same rights any student has. What really gets me is that the school was the ones telling us he needs to be challenged and is way advanced and now that we want him challenged they say no because we won't move him up a grade.
<br />My frustration comes from that fact that no one wants to look at the fact that he has CF and his life at home is a lot more complicated with treatments, doctors, exercise and not to mention the emotional side of a new diagnosis. He is in the 10% and already gets teased from being so small so they want me to put him in with 11year old kids when he is barely 9. And another concern is that from what I read CF kids go through puberty later than others.
<br />My question is if anyone is willing to post there opinion and facts about how complicated this disease is so I can print it and show it as evidence on how CF effects the lives of not only children but the whole family. CF is so rare that I truly believe that they look at him and say well he looks normal like all of the other kids so it can't be that bad..
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Discuss this issue with your CF Team. You can also contact the Cystic Fibrosis Foundation at cff.org.I am glad you did not have to fight your school!
<br />I am really wondering about mine-I have a 1st grader and my school will not give my daughter a 504 plan?? Does anyone have any experience with this?? The couselor said that a 504 is only for those that "the disease will affect there education." They have been "accomodating" but that is it. I am trying to be nice but stern regarding her health. She has been amazingly well until this month. She has now cultured psuedonomas (mabe thru the nurses rusty old sink which she was giving her water to take her pills from-YUK!)I feel like all the handbooks etc regarding CF have been thrown in the trash. We go into the hospital on Monday for a tune up for 10 days and i called today to tell them and all i got was well make sure you send a doctors note to excuse the absences! What has happened to today's education they are training the teachers and staff members to be nazis!?? I am considering hiring a 504 attorney? Any one have any ideas to break the education wall.
Contact the LEGAL DEPARTMENT at the Cystic Fibrosis Foundation. www. ccf.orgI had posted a week or so ago about the Cf and IQ so my story is in that post
My son tested into Kindergarten early at 4. He has done well in school academically but around 2nd grade I noticed how small he was and with him being sick he would get really frustrated when he missed school cause of all of the catching up. At that time we considered holding him back but decided to wait until after 3rd grade. Well in the mean time he got diagnosed with CF mid way through third, he did finish with an A average but because of all of the doctors appointments and him being sick he spent every evening trying to catch up.. So because of the stress level for him in a lot of areas dealing with a new diagnosis, missing so much school, his treatments which as everyone knows are time consuming we decided to hold him back so he is with his age appropriate class.
This years since he is repeating we tested him for the gifted program. Well the results came back and the schools recommendation is for us to have him jump from 3rd to 4th and have him do 5th grade reading and math along with the gifted they came to that recommendation based only on his IQ.
My husband and I decided that it is best for him to stay in third but to challenge him with gifted in 3rd and 4th grade reading and math (which is called enrichment program.
I just got a letter from the school saying if we don't take there full recommendation by moving him up a grade then they will not do anything with him just leave him in 3rrd with no challenges. I am completely shocked. I was told that if I want anything different I needed to go through mediation and the get an attorney for a hearing.
They will not consider Luke as an individual they are just looking at the test. They know he has CF he has a 504 plan at the school he has missed more than 20 days of school and we are just finishing up the second month. So now we have to pay for an attorney for my son to be able to have to same rights any student has. What really gets me is that the school was the ones telling us he needs to be challenged and is way advanced and now that we want him challenged they say no because we won't move him up a grade.
My frustration comes from that fact that no one wants to look at the fact that he has CF and his life at home is a lot more complicated with treatments, doctors, exercise and not to mention the emotional side of a new diagnosis. He is in the 10% and already gets teased from being so small so they want me to put him in with 11year old kids when he is barely 9. And another concern is that from what I read CF kids go through puberty later than others.
My question is if anyone is willing to post there opinion and facts about how complicated this disease is so I can print it and show it as evidence on how CF effects the lives of not only children but the whole family. CF is so rare that I truly believe that they look at him and say well he looks normal like all of the other kids so it can't be that bad..