Question about school

L

Lilliansmom

New member
So, we are relatively new to all of this. We were at the CF clinic yesterday, and I did not think to ask the doctor. He told me when we are at the hospital to tell whomever we are seeing (ER, x-ray) that the kids have cf and ask to be put in a seperate room to wait.

We got the letter home from school today asking for any requests/special considerations for placement next year. Do I need to ask them not to place DD with other kids with cf? I have no idea if there are any in her grade or even in the school. We live in a pretty small town, and in some grades there are only 1 class per grade. Is this something that we need to worry about?
 
L

Lilliansmom

New member
So, we are relatively new to all of this. We were at the CF clinic yesterday, and I did not think to ask the doctor. He told me when we are at the hospital to tell whomever we are seeing (ER, x-ray) that the kids have cf and ask to be put in a seperate room to wait.

We got the letter home from school today asking for any requests/special considerations for placement next year. Do I need to ask them not to place DD with other kids with cf? I have no idea if there are any in her grade or even in the school. We live in a pretty small town, and in some grades there are only 1 class per grade. Is this something that we need to worry about?
 
L

Lilliansmom

New member
So, we are relatively new to all of this. We were at the CF clinic yesterday, and I did not think to ask the doctor. He told me when we are at the hospital to tell whomever we are seeing (ER, x-ray) that the kids have cf and ask to be put in a seperate room to wait.
<br />
<br />We got the letter home from school today asking for any requests/special considerations for placement next year. Do I need to ask them not to place DD with other kids with cf? I have no idea if there are any in her grade or even in the school. We live in a pretty small town, and in some grades there are only 1 class per grade. Is this something that we need to worry about?
 
C

carrierae21

New member
My dd is not in school so I don't know ALL the in's and out's but I know for sure that your child needs to be separated from other cf-ers. The main reason is that you don't know what the other child (or yours as the case may be) is culturing and don't want them to be passing bacterias back and forth. I don't know if your dd takes enzymes, but that might be something to address: Does she have to go to the office or nurse to get them? How many snacks per day so you can plan for that many enzymes? Can the teacher administer them? I have also heard that parents at orientation ask all the other parents to please let her or the teacher know beforehand if they are bringing birthday or special snacks/treats so that her child isn't left out b/c she doesn't have extra enzymes. Like I said, my dd isn't in school yet so I don't know all that there is about school, these are just some of the things I have heard. Good luck!
 
C

carrierae21

New member
My dd is not in school so I don't know ALL the in's and out's but I know for sure that your child needs to be separated from other cf-ers. The main reason is that you don't know what the other child (or yours as the case may be) is culturing and don't want them to be passing bacterias back and forth. I don't know if your dd takes enzymes, but that might be something to address: Does she have to go to the office or nurse to get them? How many snacks per day so you can plan for that many enzymes? Can the teacher administer them? I have also heard that parents at orientation ask all the other parents to please let her or the teacher know beforehand if they are bringing birthday or special snacks/treats so that her child isn't left out b/c she doesn't have extra enzymes. Like I said, my dd isn't in school yet so I don't know all that there is about school, these are just some of the things I have heard. Good luck!
 
C

carrierae21

New member
My dd is not in school so I don't know ALL the in's and out's but I know for sure that your child needs to be separated from other cf-ers. The main reason is that you don't know what the other child (or yours as the case may be) is culturing and don't want them to be passing bacterias back and forth. I don't know if your dd takes enzymes, but that might be something to address: Does she have to go to the office or nurse to get them? How many snacks per day so you can plan for that many enzymes? Can the teacher administer them? I have also heard that parents at orientation ask all the other parents to please let her or the teacher know beforehand if they are bringing birthday or special snacks/treats so that her child isn't left out b/c she doesn't have extra enzymes. Like I said, my dd isn't in school yet so I don't know all that there is about school, these are just some of the things I have heard. Good luck!
 
T

TonyaH

Guest
Yes, mentioning to the school that your child should not be placed in a room with another cfer is wise. If you choose to set up a 504 plan, that should be stated in the plan as well.

We have not had an issue with any other cfers in my son's school yet, and he is going into 7th grade. But I always just make sure I let the office know how important it is, not just for Andrew's benefit, but the health of the other child, too. In fact, this year I went as far as to ask that my daughter not be in class with a cfer, either. I don't think it's an issue, as I believe we are the only cf family in our group of schools, but it doesn't hurt to have it documented that you made the request.

Good luck!
 
T

TonyaH

Guest
Yes, mentioning to the school that your child should not be placed in a room with another cfer is wise. If you choose to set up a 504 plan, that should be stated in the plan as well.

We have not had an issue with any other cfers in my son's school yet, and he is going into 7th grade. But I always just make sure I let the office know how important it is, not just for Andrew's benefit, but the health of the other child, too. In fact, this year I went as far as to ask that my daughter not be in class with a cfer, either. I don't think it's an issue, as I believe we are the only cf family in our group of schools, but it doesn't hurt to have it documented that you made the request.

Good luck!
 
T

TonyaH

Guest
Yes, mentioning to the school that your child should not be placed in a room with another cfer is wise. If you choose to set up a 504 plan, that should be stated in the plan as well.
<br />
<br />We have not had an issue with any other cfers in my son's school yet, and he is going into 7th grade. But I always just make sure I let the office know how important it is, not just for Andrew's benefit, but the health of the other child, too. In fact, this year I went as far as to ask that my daughter not be in class with a cfer, either. I don't think it's an issue, as I believe we are the only cf family in our group of schools, but it doesn't hurt to have it documented that you made the request.
<br />
<br />Good luck!
 
L

Lilliansmom

New member
Ah, I didn't even think of the other kids. Thanks for that advice as well.

What type of things should be on her 504? She has one right now due to her kidney issues/fluid restriction, but cf is so new to us that I really do not know what to ask them for. We are re-writing her 504 in the next few weeks so it is all set for next year. Any advice would be appreciated.

Oh - her brother was also just dx with cf, but he is only in preschool, so a 504 would not work for him, right? I know for a fact that there are no other cf kids in his class, so nothing else should really be a problem, or am I off base?
 
L

Lilliansmom

New member
Ah, I didn't even think of the other kids. Thanks for that advice as well.

What type of things should be on her 504? She has one right now due to her kidney issues/fluid restriction, but cf is so new to us that I really do not know what to ask them for. We are re-writing her 504 in the next few weeks so it is all set for next year. Any advice would be appreciated.

Oh - her brother was also just dx with cf, but he is only in preschool, so a 504 would not work for him, right? I know for a fact that there are no other cf kids in his class, so nothing else should really be a problem, or am I off base?
 
L

Lilliansmom

New member
Ah, I didn't even think of the other kids. Thanks for that advice as well.
<br />
<br />What type of things should be on her 504? She has one right now due to her kidney issues/fluid restriction, but cf is so new to us that I really do not know what to ask them for. We are re-writing her 504 in the next few weeks so it is all set for next year. Any advice would be appreciated.
<br />
<br />Oh - her brother was also just dx with cf, but he is only in preschool, so a 504 would not work for him, right? I know for a fact that there are no other cf kids in his class, so nothing else should really be a problem, or am I off base?
 
L

Lilliansmom

New member
Right now she is only in K, so she is only at school for 2.5 hours a day. She takes pancrease MT 10 with her morning snack. She goes to the nurse for them, and we just have a bottle there that lasts for about a month. I never thought about special treats and stuff - in K they do it all at snack time, so she just takes her regular ones, but I do not know what they do in first grade.

Guess I also need to think about lunch next year as well.
 
L

Lilliansmom

New member
Right now she is only in K, so she is only at school for 2.5 hours a day. She takes pancrease MT 10 with her morning snack. She goes to the nurse for them, and we just have a bottle there that lasts for about a month. I never thought about special treats and stuff - in K they do it all at snack time, so she just takes her regular ones, but I do not know what they do in first grade.

Guess I also need to think about lunch next year as well.
 
L

Lilliansmom

New member
Right now she is only in K, so she is only at school for 2.5 hours a day. She takes pancrease MT 10 with her morning snack. She goes to the nurse for them, and we just have a bottle there that lasts for about a month. I never thought about special treats and stuff - in K they do it all at snack time, so she just takes her regular ones, but I do not know what they do in first grade.
<br />
<br />Guess I also need to think about lunch next year as well.
 
I

izemmom

New member
My daughter will start kindergarten in August. (pardon me while I wipe a tear...)

I have a meeting set up with the principal, teacher, district nurse and school secretary (the lady who makes it all happen!) for late July. I will ask if they advise a 504 for this year or not. I'd like it in place, but it is only half day kindergarten, so we'll see what they say. For sure I'll request one the following year.

Here is my partial list of special accommodations that I want to have in writing...

1. bathroom breaks as needed, not just when the class goes
2. gatorade made available during and after recess during hot months
3. we be notified if there is another CF child, or at least that they be separated
4. enzymes taken in the classroom or lunchroom rather than the office (I'm expecting to have to battle that one, mightily!)
5. regular 2 way communication in a notebook regarding health issues (or, just get the teacher to agree to regular e-mails) I want to know if they notice increased cough, more bathroom use than normal, SOB, fatigue...all of my red flags.
6. consideration given to Emily's nutritional needs when the "Healthy bodies" unit is taught. This is a BIG deal in K and 1st. My older (non cf) daughter was upset that her teacher taught that fatty salty foods are bad for EVERYONE because she knew that Emily needed more of these than the rest of us. I want to try to use this unit as a springboard for teaching the class about how Emily's body works differently
7. I am hoping to give the teachers "words to use" when kids ask about Emily's feeding tube. I figure if I can write them into our plan we might get everyone educated and on the same page

I know I have a longer list, but these are the ones that come to mind.

Good luck as you enter this next phase of life! Kindergarten! Oh my!
 
I

izemmom

New member
My daughter will start kindergarten in August. (pardon me while I wipe a tear...)

I have a meeting set up with the principal, teacher, district nurse and school secretary (the lady who makes it all happen!) for late July. I will ask if they advise a 504 for this year or not. I'd like it in place, but it is only half day kindergarten, so we'll see what they say. For sure I'll request one the following year.

Here is my partial list of special accommodations that I want to have in writing...

1. bathroom breaks as needed, not just when the class goes
2. gatorade made available during and after recess during hot months
3. we be notified if there is another CF child, or at least that they be separated
4. enzymes taken in the classroom or lunchroom rather than the office (I'm expecting to have to battle that one, mightily!)
5. regular 2 way communication in a notebook regarding health issues (or, just get the teacher to agree to regular e-mails) I want to know if they notice increased cough, more bathroom use than normal, SOB, fatigue...all of my red flags.
6. consideration given to Emily's nutritional needs when the "Healthy bodies" unit is taught. This is a BIG deal in K and 1st. My older (non cf) daughter was upset that her teacher taught that fatty salty foods are bad for EVERYONE because she knew that Emily needed more of these than the rest of us. I want to try to use this unit as a springboard for teaching the class about how Emily's body works differently
7. I am hoping to give the teachers "words to use" when kids ask about Emily's feeding tube. I figure if I can write them into our plan we might get everyone educated and on the same page

I know I have a longer list, but these are the ones that come to mind.

Good luck as you enter this next phase of life! Kindergarten! Oh my!
 
I

izemmom

New member
My daughter will start kindergarten in August. (pardon me while I wipe a tear...)
<br />
<br />I have a meeting set up with the principal, teacher, district nurse and school secretary (the lady who makes it all happen!) for late July. I will ask if they advise a 504 for this year or not. I'd like it in place, but it is only half day kindergarten, so we'll see what they say. For sure I'll request one the following year.
<br />
<br />Here is my partial list of special accommodations that I want to have in writing...
<br />
<br />1. bathroom breaks as needed, not just when the class goes
<br />2. gatorade made available during and after recess during hot months
<br />3. we be notified if there is another CF child, or at least that they be separated
<br />4. enzymes taken in the classroom or lunchroom rather than the office (I'm expecting to have to battle that one, mightily!)
<br />5. regular 2 way communication in a notebook regarding health issues (or, just get the teacher to agree to regular e-mails) I want to know if they notice increased cough, more bathroom use than normal, SOB, fatigue...all of my red flags.
<br />6. consideration given to Emily's nutritional needs when the "Healthy bodies" unit is taught. This is a BIG deal in K and 1st. My older (non cf) daughter was upset that her teacher taught that fatty salty foods are bad for EVERYONE because she knew that Emily needed more of these than the rest of us. I want to try to use this unit as a springboard for teaching the class about how Emily's body works differently
<br />7. I am hoping to give the teachers "words to use" when kids ask about Emily's feeding tube. I figure if I can write them into our plan we might get everyone educated and on the same page
<br />
<br />I know I have a longer list, but these are the ones that come to mind.
<br />
<br />Good luck as you enter this next phase of life! Kindergarten! Oh my!
 
R

Ratatosk

Administrator
Staff member
Lisa Greene's website has some suggestions, as well as a letter to teachers, which is what were used as an outline for DS' 504 plan. DS started all day kindergarten last year at an early childhood center and I was terrified. Next fall he starts first grade at the elementary school, so we'll have to retrain some new people. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I printed off info regarding school and CF from the cff.org site as well as some other documents from other sites. I think Lisa has a lot of the links on here:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.com/TipsForCFParents.html">http://www.happyheartfamilies.com/TipsForCFParents.html</a>
 
R

Ratatosk

Administrator
Staff member
Lisa Greene's website has some suggestions, as well as a letter to teachers, which is what were used as an outline for DS' 504 plan. DS started all day kindergarten last year at an early childhood center and I was terrified. Next fall he starts first grade at the elementary school, so we'll have to retrain some new people. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I printed off info regarding school and CF from the cff.org site as well as some other documents from other sites. I think Lisa has a lot of the links on here:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.happyheartfamilies.com/TipsForCFParents.html">http://www.happyheartfamilies.com/TipsForCFParents.html</a>
 
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