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Thread: Question about school

  1. #11

    Question about school

    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?

  2. #12

    Question about school

    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?

  3. #13

    Question about school

    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.

  4. #14

    Question about school

    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.

  5. #15

    Question about school

    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.

  6. #16

    Question about school

    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!

  7. #17

    Question about school

    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!

  8. #18

    Question about school

    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!

  9. #19

    Question about school

    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>

  10. #20

    Question about school

    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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