Starting School - what all did you do?

[sdavis227]

DS will be starting school this month and I am a bit confused on how far to go with everything right away and wondered if anyone could tell me what their experience has been. Areas of concern are diet, 504 and other children.
I'm curious how I should go about trying to add calories to his diet while in school. I hate how everything is geared toward low fat for our kids when there are some kids that really need the fat. Have you started out speaking to the school about ways to add calories or have you just pushed the cals more at home or even just taken a wait and see approach?
I also have no idea if I should go ahead and speak with the school about a 504 for him or take the "wait and see" approach. DS has really been doing well and hopefully (knock on wood) it stays that way and we won't need to deal with a lot of time out of school or other 504 issues.
Then there are the times when sick children come to school and times where there is quite a bit of illness going around in the school. I saw the other post to preschool parents and am wondering how many people have gone the route to write a letter to parents vs. discussing more with the teacher and nurse.

Any advice would be much appreciated as I feel quite nervous about this new chapter in DS's life.

Thanks!

 

[welshwitch]

Hello,

congrats on this new chapter! How old is your son? My mom usually went and talked to the teacher before school started and let them know what was going on. She often brought brochures or literature on CF as well. Does your son have school lunches or can he bring his own? I always brought my own lunch to school. As far as I know we really never had any issues. But I think talking to the teacher first helped a lot. One thing I remember really appreciating as a child was the ability to take my pills myself instead of having to go to an office to do so. Gave me an increased sense of privacy and also ownership of my CF.

 

[running4life]

When I was in school, my mom always spoke with the teacher and administration staff at school before school started each year. She would let them know that I needed unlimited bathroom breaks, always had to have access to water, and if I wanted a snack that I needed to be allowed to have it (even if that meant going to the office to eat it). Mom would pack my lunch with tons of high-calorie food - lots of cheese, peanut butter, mixed nuts, etc, and I would drink either whole milk or juice (this was pre-diabetes). Be vocal, but be kind. Let them know your expectations and just be honest with the staff and teachers. They are more than likely ignorant on this disease so educating them is key.

As for days missed, there was always an issue with that, but we finally got a note from my doctor saying I needed more rest and time home therefore, I needed more days off than most kids. I missed a lot of school in elementary school, but was never hospitalized so I can imagine if a child with CF was very sick, they'd miss much more than I did. Also, mention getting work done when a child is out. Have a system (either a friend brings it home or you go pick it up) to get the work done if your child will be out for an extended period of time.

Good luck - you can do this!

 

[Ratatosk]

We prepared a letter to teachers -- used the one from Lisa Greene's site http://www.happyheartfamilies.com/TipsForCFParents.html as a guide -- to address our concerns. And also provided several pamphlets from the site. Spoke to the principal before school indicating our primary concern was the enzyme issue. A meeting was set up with the school district nurse, counselor, principal and DS' teacher to see if they had any questions.

Our primary concern was the enzyme issue -- making sure there wasn't a delay, that he didn't miss out on anything. We stressed that he's a normal child who just needs a few extra things to keep him happy and healthy. Access to water -- he now has his own water bottle in his classroom. Access to bathrooms -- that if he says he has to go, not to restrict him, that he's not one to abuse the bathroom pass.

With snacks, they bring their own and it's supposed to be low calorie, low fat -- DS brings peanuts every day, which is okay, sometimes a protein bar. We WERE told that he doesn't have to follow the rules on that one; however, IMO, it's not fair to the other kids if he brings something REALLY, REALLY good and fattening. If there's something on the lunch menu he doesn't like, I usually just pack a lunchable for him.

One issue that has come up is that there will be a student wcf starting at his school this year. Two grades separate them, so they shouldn't be in contact with each other at all.

The letter to teachers is fairly comprehensive and covers a lot of your concerns and what ifs. Enforcing the sick policy was a biggy for us. The first year he attended school there was the H1N1 scare, so the schools were very strict about sick kids.

 

[JENNYC]

Hi!! We have a meeting before school starts every year with her principal, nurse, PE teacher, and teacher. I give them an update on what has happened over the summer and bring a letter from her dr and a list of my concerns. We go over her 504 plan and see if we need to amend it in any way. One problem that we had was the nurse and teacher not understanding that the enzymes had to be taken RIGHT before she ate, and also another one that never crossed my mind until it was too late was the healthy eating that they go over in class. You will find out that the teacher is the smartest person on the planet and mom becomes the dumb one. LOL She came home from school and told me that I was putting too much butter on her food, and that chips were not a healthy snack and the list goes on. But I had to go up to the teacher and have the teacher explain because my explanation was not good enough as to why these things were good for her. AWW good times Makes me laugh now but back then, not so much. So every year I tell the teacher to be sensitive to Abby when going over the healthy eating in class. Also my teacher calls me if she notices excess cough or sniffles, and she also alerts me if she has a sick child and what they are sick with so I can be on the look out. She keeps Abby away from sick kids as much as she can. They also keep Abby in doors if someone is burning outside or if the dust is excessive, which it often is where we live. Well that is all I can think of at the moment. Good luck!! He will do fine I'm sure!!

 

[sdavis227]

Thank you everyone for your responses. DS is 5 and starting Kindergarten. With my older, non-CF child, I have always just had him eat school lunch. I was thinking that maybe with the CFer I could do the same but then pack some extra stuff from home.

As far as talking with the teacher, we don't even know which teacher will be his yet and school starts a week from tomorrow. I am getting extremely nervous about all this for some reason. It seems the more pamphlets, letters and 504 plans I read the more I say "Oh yeah, we need to worry about that too".

Did any of you have your supplies separate from the rest of the class? I know that most schools around here always put together everyone's back to school supplies and then share them throughout the year. I really feel like separating his to be his would greatly reduce the passing of germs but also hate to make him so "different".

Did any of you ask if there was another CFer at the school? I understand they wouldn't be able to say who but I also feel like the whole 3 foot rule with CFers might be ignored by an ignorant teacher or two. There are more than 700 students at this school and over 60 teachers plus any subs that come in who could be completely clueless if working with my son.

 

[JENNYC]

Well, if you don't meet with the school ahead of time, who is going to monitor his meds? You can't just drop him off without knowing, and the first day of school is not a good time to try to have a serious conversation with his teacher due to the mass chaos that the teacher will already be dealing with . I would contact the school as soon as possible and set up a meeting. That would worry me to death. Also I would give the teacher your email, and cell number so if she has any questions about your son she can contact you. I would also ask her to keep you informed of any change in his health and any sickness that is going around so that you can keep your eye on your son for any symptoms. And I think it would be a good idea to ask and see if there are more CFer's there. Good luck and best wishes!!

 

[Ratatosk]

We always meet with the teacher, counselor, nurse and sometimes principal before school starts to discuss his 504 plan. The 504 plan is pretty much word for word from the Letter to Teachers that we write. Last year the teacher wasn't available but I had sent ahead all the info from previous years. At back to school night where we drop off school supplies and check out the class room, I made it a point to visit with the teacher despite the chaos, just said he needs his enzymes and to email or call me if there were any questions.

DS eats regular school food, but I make sure he gets a good snack afterschool.

 

[sdavis227]

We should know which teacher he is getting tomorrow. I am planning then on sending a letter to the teacher, nurse and will CC the principal. There is already a record of what he takes and will need to take as far as medicine goes from registration and I have spoken to the nurse in the past about him starting this year. I guess I just don't know how much to throw at everyone right away.... 504, nutrition, germs, and what to take a wait and see approach to.

Like I said, he has been doing very well. We have even been able to stay out of the hospital for the past two years. I don't want to be the overbearing parent as the school has already had to deal with me regarding our eldest and him having a 504 and also don't want him singled out but I also want him to stay as healthy as possible.

As of a couple of months ago I wasn't even sure if I was going to put both boys in public school this year - I strongly thought about homeschooling which still may happen in later years.

I will push for a meeting with the teacher and will definitely be in contact with the nurse in the days before school starts.

Ratatosk - Did you have the 504 in place before starting school or was it during the first school year?

 

[Gammaw]

Theres lots of good advice here, so I won't duplicate it. But I have a couple of things to add - as far as extra calories and snacks, I found that it was very helpful to simply supplement his snacks - I provided a case of Boost or Ensure, which he could drink at afternoon snack time (so it didn't ruin his lunch or dinner). I also packed "extra snacks" in his lunchbox which he could use as a substitute snack either in the morning or afternoon if he was hungry. I also provided a case of Gatorade to ensure good hydration, which he could drink with his morning snack, during P.E., and anytime such as recess if he was playing outside in the heat or was thirsty. I found Gatorade seemed to do better for him than water. I spoke with the teachers as well as the principal about my similar concern that other children might feel his extra food or drinks was unfair. The principal was quite matter of fact about it - they accomodate the special needs of ALL children, and other children must accept that. It includes those with peanut allergies, wheelchairs, diabetics, kids with asthma etc. If our guy needs something different, then so be it - the other children will get used to it. Frankly, all the children soon learned to remind the teacher that our CFer needed enzymes before snacks and lunch. At 5, they are not likely to always remember their enzymes, so the teacher had control of them. Although the teachers and Principal knew he has CF, I did not feel it was my right to tell all the other children and their parents about it. I would be perfectly comfortable with it, but I don't have CF. He does. That will be his choice, which I will not take away from him. I did, however, impress upon the teachers that if there is a child in class that is ill, and they do not meet their requirements to send them home, please let me know (without identifying the child) so I have the option of removing MY child to avoid illness. I do meet with any new teachers each year to explain CF, enzymes, hydration, bathroom issues, burping, gas, and any hygiene issues. I ensure that I have made a good connection with them, answered any questions, made myself extremely accessible for questions or concerns, and keep the lines of communication open. To date, my relationship with teachers has remained excellent and so has his care in class. I have teachers who call me as soon as he starts coughing (his baseline is no cough) which has enabled me to call his CF Team early enough to avoid another night going by without meds if necessary. That way, I don't have to pick him up and get him home to assess before I realize I need to call the doc. I know before I get there! It has saved him from more extended illnesses on more than one occasion.

 

[Ratatosk]

Shannon,

When he started kindergarten, they orginally told us they didn't need to do a 504; however, the school counselor took our letter to the teacher and created a 504 document and scheduled a meeting with the teacher, principal, a school district nurse... So he's had one since he started school.

DS also has an IEP; however, that is only for speech therapy.

 

[LisaGreene]

There are so many great replies here that I won't redo what's already been said but will try to add to it. Also, thanks Ratatosk, for mentioning my Back to School resources at www.TipsForCFParents.com.

1. DEFINITELY set up a meeting with the school BEFORE the first day to get the details about enzymes and other meds (like albuterol for asthma) ironed out. Here is an article which will tell you how to do this called Starting the School Year on Track with a Parent-Teacher Meeting and a Health Care Plan: http://www.happyheartfamilies.com/articles/article/6447390/159047.htm

2. Be aware of the differences between a IHCP (individualized health care plan) versus 504 BEFORE you talk with the school staff. The first link explains IHCP's. Here is a link to my site for an article that talks about 504 Plans: http://www.happyheartfamilies.com/articles/article/6447390/159132.htm

3. Link to a sample 504 plan for a CF child in elementary school. Pick and choose what is applicable to your child; this list is VERY comprehensive: http://www.happyheartfamilies.com/articles/article/6447390/130282.htm

4. I use the Teacher Letter mentioned by Ratatosk every year for my daughter even though she ALSO has a 504 plan now. The teachers LOVE it (and so do summer camp counselors). Link: http://www.happyheartfamilies.com/articles/article/6447390/109108.htm

5. If don't get a 504 right away, as soon as your child hits junior high, healthy or not, get a 504 plan in place. It will protect your child esp when grades start to really matter. Some people suggest getting one in 3rd or 4th grade if it will carry over to Jr Hi and HS (if they are in the same school district, it should but each place is different). BE SURE TO UPDATE IT if health status changes or they move into Jr. High.

6. Start thinking about how you want to handle the "news" about CF to your child's classmates. I have written alot about this issue including dealing with teasing about CF. Link: http://www.happyheartfamilies.com/SchoolIssues.html

Good luck with starting a new school year. Our kids, both with CF, love school and are very well adjusted with their friends and peers. Your children can be too! Hugs and Hope, Lisa

 

[scrapper1264]

We never knew the teacher until a few days before Open House so I always called the nurse ahead of time to schedule a meeting. I always met with the teacher a couple of days before school started except last year. Last year the teacher had had a student with CF so she really did have the need/time for a meeting. DS has to go to the nurse for enzymes so I just reminded her of that. DS is old enough now to know that he needs them so I was not worried that he would forget to go to the nurse.

Our school also does not update or create new 504's until October after everything settles down from the first day of school. DS's teachers knew the basics so I did not have an issue with that. Even though your son is doing great (which is wonderful by the way!!) I would include everything in it so you do not have to revise it in the middle of the year.

I was a basket case when my son first started kindergarten but thankfully the school we were in at the time handled everything beautifully.

Good luck!