thoughts on school

[drdanika]

Hi all,
I am a mom to a 4 year old CF girl. She will be starting kindergarten next fall. I am looking into different types of schools for her. I want to know from those of you who have been there, what are your experiences with schools. Did you go to public? private? alt ed? montessori? home school?
What did you like or not like about them in relation to your CF?
If you had a CF kid, what kind of school would you send them to?
Any other tips for us?

Thanks for your thoughts!!
-C

 

[drdanika]

Hi all,
I am a mom to a 4 year old CF girl. She will be starting kindergarten next fall. I am looking into different types of schools for her. I want to know from those of you who have been there, what are your experiences with schools. Did you go to public? private? alt ed? montessori? home school?
What did you like or not like about them in relation to your CF?
If you had a CF kid, what kind of school would you send them to?
Any other tips for us?

Thanks for your thoughts!!
-C

 

[Havoc]

I went to a public school, but for non-CF reasons was transferred to a private school in the middle of first grade. I remained in private school until 9th grade and switched back to get some kind of normalcy before going to college.

I suppose the biggest obstacle (at least in my case) were the enzymes with meals. Most schools (at least in my day) publish the menu for the week or month. This allowed my parents in the early days to figure out how many enzymes I would need based on eating all of my meal. I learned at an early age to swallow the capsules and also learned how to dose, which made things a lot easier.

 

[Havoc]

I went to a public school, but for non-CF reasons was transferred to a private school in the middle of first grade. I remained in private school until 9th grade and switched back to get some kind of normalcy before going to college.

I suppose the biggest obstacle (at least in my case) were the enzymes with meals. Most schools (at least in my day) publish the menu for the week or month. This allowed my parents in the early days to figure out how many enzymes I would need based on eating all of my meal. I learned at an early age to swallow the capsules and also learned how to dose, which made things a lot easier.

 

[ryry11]

I went to public from 1st grade on. Enzymes were a pain. Until I was 2 weeks into my freshman year, I had to go to the nurse to get my enzymes. That made me very responsible very early on. Sure, if I forgot, the nurse would sometimes remember to get me out of class, but by that point it was too late. I rarely forgot. But it was just annoying for things like field trips. I had a couple years where I missed 5 weeks or so in the fall, because I was so sick coming back. At that point, it might not hurt to have a year-round school so that all the bugs don't hit a 'calmed down' (?) immune system in fall. Get her used to swallowing pills, not in applesauce or whatever (I don't know if she can already?) and also, get her used to explaining how she's feeling. "I don't feel good" doesn't hold much weight with a nurse that's too lazy to look up that your kiddo has CF, but "My lungs are tight and my head hurts here." is pretty self-explanatory. Talk to the school before the year even starts.

 

[ryry11]

I went to public from 1st grade on. Enzymes were a pain. Until I was 2 weeks into my freshman year, I had to go to the nurse to get my enzymes. That made me very responsible very early on. Sure, if I forgot, the nurse would sometimes remember to get me out of class, but by that point it was too late. I rarely forgot. But it was just annoying for things like field trips. I had a couple years where I missed 5 weeks or so in the fall, because I was so sick coming back. At that point, it might not hurt to have a year-round school so that all the bugs don't hit a 'calmed down' (?) immune system in fall. Get her used to swallowing pills, not in applesauce or whatever (I don't know if she can already?) and also, get her used to explaining how she's feeling. "I don't feel good" doesn't hold much weight with a nurse that's too lazy to look up that your kiddo has CF, but "My lungs are tight and my head hurts here." is pretty self-explanatory. Talk to the school before the year even starts.

 

[sjzbell]

Hello! I have to say that we've been VERY lucky when it comes to school & enzymes. My son has been to 3 different schools (all public) since diagnosis & we've never had a problem w/ the SCHOOL. Now maybe getting my son to remember to GO to the nurse every day is a different story, but the nurses have always tracked him down if he doesn't show up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've always gone in personally to the nurse to meet them & let them know how important this is. I always give each teacher & nurse a copy of the booklet that the CF center has given to us & also given them all sorts of websites to find CORRECT info about CF. I think education of the disease is vital in situations like this. They've always been very helpful & asked lots of questions, which helps. Then when it comes to illnesses, they understand better & are more willing to help. I've even had good luck w/ sending meds for brth tx's during exacerbations & they've been helpful. I'm sure it depends on the school/nurse as well.

 

[sjzbell]

Hello! I have to say that we've been VERY lucky when it comes to school & enzymes. My son has been to 3 different schools (all public) since diagnosis & we've never had a problem w/ the SCHOOL. Now maybe getting my son to remember to GO to the nurse every day is a different story, but the nurses have always tracked him down if he doesn't show up. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've always gone in personally to the nurse to meet them & let them know how important this is. I always give each teacher & nurse a copy of the booklet that the CF center has given to us & also given them all sorts of websites to find CORRECT info about CF. I think education of the disease is vital in situations like this. They've always been very helpful & asked lots of questions, which helps. Then when it comes to illnesses, they understand better & are more willing to help. I've even had good luck w/ sending meds for brth tx's during exacerbations & they've been helpful. I'm sure it depends on the school/nurse as well.

 

[Ratatosk]

DS goes to a public school. We did use Lisa Greene's website as a reference --- Letter to teachers, guides, etc. --- to prepare the 504 plan. Because we don't have full time school nurses as our schools his kindergarten teacher administered enzymes and since 1st grade he's gone to the office before snacks and meals. Not an ideal situation, but he can't be trusted yet with self adminstration, so this works fairly well for us. Plus the office admin reminds him if he or his teacher forget.

Basically he's just like any other child with the exception of the enzyme issue and reminding them about possible emergency bathroom visits or need for water on warmer days. He has his own water bottle at his desk.

 

[Ratatosk]

DS goes to a public school. We did use Lisa Greene's website as a reference --- Letter to teachers, guides, etc. --- to prepare the 504 plan. Because we don't have full time school nurses as our schools his kindergarten teacher administered enzymes and since 1st grade he's gone to the office before snacks and meals. Not an ideal situation, but he can't be trusted yet with self adminstration, so this works fairly well for us. Plus the office admin reminds him if he or his teacher forget.

Basically he's just like any other child with the exception of the enzyme issue and reminding them about possible emergency bathroom visits or need for water on warmer days. He has his own water bottle at his desk.

 

[SIcklyhatED]

I went to public school up until 10th grade, when I transferred to a private high school for non-CF related reasons. The main "issue" was enzymes, but that was really a non-issue. The school nurse was familiar with me and I'd just pop in after lunch, take my pills, show off that I didn't need water, and go. If I forgot, they'd call my teacher and have me go down. During freshman year I got tired of having to have someone else give me my meds so I just stopped going in and my parents were cool with it.
I think as far as "alerting the authority" about my CF my parents would just fill out the normal health forms, say "has CF" and if anyone had any questions they could ask. They never made a big deal about it, which was key. No one likes those pushy parents who FREAK OUT and think their kids the only one who's got some medical issue at the school.

 

[SIcklyhatED]

I went to public school up until 10th grade, when I transferred to a private high school for non-CF related reasons. The main "issue" was enzymes, but that was really a non-issue. The school nurse was familiar with me and I'd just pop in after lunch, take my pills, show off that I didn't need water, and go. If I forgot, they'd call my teacher and have me go down. During freshman year I got tired of having to have someone else give me my meds so I just stopped going in and my parents were cool with it.
I think as far as "alerting the authority" about my CF my parents would just fill out the normal health forms, say "has CF" and if anyone had any questions they could ask. They never made a big deal about it, which was key. No one likes those pushy parents who FREAK OUT and think their kids the only one who's got some medical issue at the school.

 

[rubyroselee]

I went to public school my entire life and LOVED it. I am so glad that I went through the public school system because it gave me a sense of normalcy and I was able to be involved in all of the things that most other kids do (after-school activities, sports, etc).

I had quite an easy time in school with enzymes. I was able to bring them in my lunchbox through elementary school and I just took them on my own. Also, my teachers had a bottle of them in their school desks for when we had snacks in the classroom. Starting from middle school, I continued to bring enzymes on my own and had an emergency back-up bottle in the nurse's station.

So, apparently the rules were not very strict at my schools back then and I was able to independently take care of my own pills. And it worked out really well that way. But I think schools are much more cautious these days, so policies are probably quite different.

 

[rubyroselee]

I went to public school my entire life and LOVED it. I am so glad that I went through the public school system because it gave me a sense of normalcy and I was able to be involved in all of the things that most other kids do (after-school activities, sports, etc).

I had quite an easy time in school with enzymes. I was able to bring them in my lunchbox through elementary school and I just took them on my own. Also, my teachers had a bottle of them in their school desks for when we had snacks in the classroom. Starting from middle school, I continued to bring enzymes on my own and had an emergency back-up bottle in the nurse's station.

So, apparently the rules were not very strict at my schools back then and I was able to independently take care of my own pills. And it worked out really well that way. But I think schools are much more cautious these days, so policies are probably quite different.

 

[AleksandraKaczynska]

Wow - I also have the same "problem" this fall as Asia is 4 now.
She will be attending public school - but a small one - we can decide if we want to send kids to kindergarden for preschool or to school. So we decided it will be school - so she will not go to kindergaden - where alot more of kids get sick> but we chose a small school very close to where we live. Latrer on I hope she will attend public highschool and gymnasium - also local - but very big.
I live very close to our capital and can choose from different schools - however I chose a school smallest but also clossest to home...
what do you think about this?

 

[AleksandraKaczynska]

Wow - I also have the same "problem" this fall as Asia is 4 now.
She will be attending public school - but a small one - we can decide if we want to send kids to kindergarden for preschool or to school. So we decided it will be school - so she will not go to kindergaden - where alot more of kids get sick> but we chose a small school very close to where we live. Latrer on I hope she will attend public highschool and gymnasium - also local - but very big.
I live very close to our capital and can choose from different schools - however I chose a school smallest but also clossest to home...
what do you think about this?

 

[drdanika]

Thanks for all your thoughts.

Right now we are weighing a normal kindergarden vs a "no-grade" school that is part of the public school system. The no-grades school is k by it's self, then 1st-3rd grade in one class, 4th-6th, and then 7th and 8th. This means that after kindergarden, she would have the same teacher for 3 years in a row. She would also stay with mostly the same group of students throughout.

It is out of our district, but they are willing to do boarder exemptions for this program. So the down sides are no bus service, and a greater transition when high school starts.

I know that enzymes will be an issue, but what I am more worried about is how my little one will be treated by her peers. I remember very well how mean little girls can be to eachother. There is something to be said about making CF as much of a non-issue as possible, but I still want all her teachers to be informed incase something unexpected happens. I also want them to be understanding about absences. I plan on getting an IEP, and meeting with her school nurse and teachers.

Thanks for all your thoughts. I have a lot of anxiety about this, and it's only February!!

Aleksandra,

I deffinately think a smaller group is the way to go. Let me know how things go for you and your little one. So happy that you have lots of options. Good luck!

-C

 

[drdanika]

Thanks for all your thoughts.

Right now we are weighing a normal kindergarden vs a "no-grade" school that is part of the public school system. The no-grades school is k by it's self, then 1st-3rd grade in one class, 4th-6th, and then 7th and 8th. This means that after kindergarden, she would have the same teacher for 3 years in a row. She would also stay with mostly the same group of students throughout.

It is out of our district, but they are willing to do boarder exemptions for this program. So the down sides are no bus service, and a greater transition when high school starts.

I know that enzymes will be an issue, but what I am more worried about is how my little one will be treated by her peers. I remember very well how mean little girls can be to eachother. There is something to be said about making CF as much of a non-issue as possible, but I still want all her teachers to be informed incase something unexpected happens. I also want them to be understanding about absences. I plan on getting an IEP, and meeting with her school nurse and teachers.

Thanks for all your thoughts. I have a lot of anxiety about this, and it's only February!!

Aleksandra,

I deffinately think a smaller group is the way to go. Let me know how things go for you and your little one. So happy that you have lots of options. Good luck!

-C

 

[threebabies]

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home school because he is afraid of her catching little bugs throughout the year. I want her to go to school because I want her to have some normalcy in her life. Also, I don't think I can manage home schooling right now. I know she needs a 504 plan and an IEP. Our cf center social worker suggested that we request a 1:1 assistant just for this year. We will see if that would be a good idea. We are also having anxiety about the whole process. Good luck to you.

Gina, mom to Sophia 4 w/cf, Peter and Gavin 2.7 w/cf. Df508 & py849x

 

[threebabies]

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home school because he is afraid of her catching little bugs throughout the year. I want her to go to school because I want her to have some normalcy in her life. Also, I don't think I can manage home schooling right now. I know she needs a 504 plan and an IEP. Our cf center social worker suggested that we request a 1:1 assistant just for this year. We will see if that would be a good idea. We are also having anxiety about the whole process. Good luck to you.

Gina, mom to Sophia 4 w/cf, Peter and Gavin 2.7 w/cf. Df508 & py849x