Starting school

[letefk]

My daughter is starting Kindergarden this fall (all day), and I was wondering if any of you had any tips for handling care at school and/or warnings about things we should watch out for. At this stage, we are very open with our daughter about CF, but fairly private with others outside of close friends and family. Obviously we have notified the school so we can arrange for meds during the day, but are there other issues we should be thinking about?

_____
Mom to 5 yr w/ cf and 2 yr w/ borderline CTR-related issues

 

[JazzysMom]

Hygiene is very important especially in the younger years of school. Not just for colds etc, but for more "unusual" things like Pin WOrms & Ringworm as well. I hope some of the many moms with little ones will pipe in soon on this......

 

[lovemygirl]

Our daughter just finished kindergarten and it was a good year. We all learned a lot and were fortunate to have good communication with the school. I spoke to the teacher before the year started and then gave her some literature to read.
One trick that worked well for us was to mark the # of enzymes on her food packaging. To say 5 for a meal and 4 for a snack is vague and not always the case.
We chose to send 3 bags-a lunch bag, morning snack and afternoon snack. She knew which bag to have when and knew that the morning snack was always fruit and didn't need enzymes. The other snack bag had a # on it to let her know how many enzymes she needed. You may not need to do this but it was very helpful for our family and it was the teacher that suggested it. We also use it for summer day camp. Also, they don't always let them go wash their hands so I usually pack a wet wipe in her lunch box so she can "wash" them before eating.
This will be a big year for her as she gains independence with her pills. Our daughter learned to talk about her condition to her friends, but sometimes she gets frustrated at answering the same questions all the time and then tells us she doesn't want to have CF anymore. Those days are hard to handle for all of us, but they are few and far in between. We've always told her that CF is part of who she is and that she should always be proud of herself, because we are proud of her.
I am sure she will enjoy kindergarten as much as my daughter did, and you may be shocked to see that it really is not that much of an issue because the schools are used to dealing with all kinds of conditions nowadays.

 

[coltsfan715]

I know one thing that was beneficial for me when I was in school was to get a note before school started from my doctor that said that they should let it be my decision as to whether or not I participate in Physical Education. They of course did not tell me that I could have said no I don't feel like it when I was in school, but it made it nice because if I was having a hard time with excess coughing I could say I don't feel well and I wasn't pushed to participate, I didn't get not participating counted against me and I didn't have to make up any missed day .. like running the mile or 50 jumping jacks or what have you.

That came into play more as I got into high school and was sicker or sick more often, but still not a bad thing to have.

Also if you it is possible that your daughter may be hospitalized during the school year you may want to talk to the school about setting up homebound. I know here they set can set it up whenever and all you would have to do is sign the papers. Homebound would send a teacher to your house or even to the hospital with all of the work she woul be missing and they could teach it to her if need be. It doesn't count the absences against her (like if you get so many in a year you fail - that wouldn't apply). We always did that before the year started because it takes a few weeks to get all the paperwork done (well it used to anyway). That way you do it now and the first or second day she is out she could have someone there - it is for prolonged absences though not just one day here or there.

Take Care,
Lindsey

 

[amysmom]

Hi - I am the mother of a 25 year old girl with CF (her blog -
AMY).  If there was one thing that I think is crucial when
children (with CF) start school, it would be to be completely open
about it.    We had always been open with family and
friends about her illness.   When she started
school, we continued that.  When Amy was in lst grade, she
decided to put on a 'presentation' about CF.  She wrote a
little paper to describe it and brought in a few things to 'show'
like nebulizer parts and enzymes.  At that age, CF was still a
novelty to her and her classmates saw it the same.  From then
on, it was never a big deal or even very interesting to anyone.
 The worst thing you or your daughter can do is to hide it.
 The secrecy alone will make it irresistable to find out about
which will set your daughter up for attacks from the mean children.
 I think everything after this is a piece of cake (taking
medications, seeing the nurse, etc.).  I gently encouraged Amy
(without her knowing) to show her friends things that were 'fun' to
them at that age like trying her vest on (which they all STILL love
to do!), mixing her medications for aerosol treatments and things
like that.  The other thing we did was to make sure Amy
started to get the message that ultimately this was her problem.
 She wasn't entitled to special treatment, other than taking
medication.   Of course she needed help from the teachers
and school nurse, but the overall attitude is that this is a side
issue you have and you have to take it on and not expect everyone
around you to walk on eggshells because of it.  This helped
Amy with her friendships and also with teachers, who didn't get the
feeling they had to treat her extra special . This built the
feeling that she was normal, like everyone else, but with stuff to
deal with.  I believe it's always our fear that gets in the
way of incorporating CF into their otherwise normal life.

 

[welshgirl]

i agree with amy's mum. i definitely don't want my son to grow up feeling like a "victim". i feel he will need to be strong mentally as well as physically!!!! hope i don't sound harsh<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[letefk]

I really appreciate the suggestions. I should explain, though, what I mean by keeping things fairly private; our reasons for being fairly private have to do with concerns about employment. I am an untenured professor. I would prefer if my children's condition not be used for or against me in my tenure decision (next year); it is a complicated situation that I can't get into here. We are open with her caregivers at daycare and with school, but other than that, we tend not to talk about it outside of close friends and family. As she grows more aware of her CF and what it means, we are more open, too. We have no plans to make this a secret, and there are people, even at work, that know. We talk openly with her about CF at home, and never send any signals that it is a secret. I guess we have always tended to be fairly private people; living in a small college town just intensifies it. Mostly, we are the type that like to be left alone, except for the small of circle of people we are very close to. But I would hate for her to feel that we were trying to hide her CF; we will have to be careful that we strike the right balance. Any suggestions are welcome; it is all new territory to us.

 

[NoExcuses]

how could your children's decision be used against you in your tenure decision?

 

[LisaV]

Amy, family caregivers are frequently discriminated against in the workplace.
See
<a target=_blank class=ftalternatingbarlinklarge href="http://www.uchastings.edu/site_files/WLL/Caregiver_Discrimination_Report.pdf#search='discrimination%20family%20member%20disabled%20military%20housing'">http://www.uchastings.edu/site...%20military%20housing'</a> .

 

[letefk]

Yes.  I don't really fear any conscious discrimination, but I
have seen several examples of how the assumptions and judgments
people make about women, especially working women, and about
disabilities and illness subconsciously shape hiring
decisions, and that has led me to feel uncomfortable.   I
have consulted with several women colleagues, both in higher ed and
in other professional tracks, and they agreed that I should be
cautious.  Most of my male colleagues would feel I am being
paranoid, however, I do not have a history of over-sensitivity and
am in general a very easy-going person.  I have recently
fought passionately about a hiring decision that I fear (but cannot
prove) was influenced by issues that should not have
been relevant.  Unfortunately, the tenured women in my
department are wallflowers.  I pushed as hard as I could, but
I could not change the decision.  <br>
<br>
I am not worried about my department, who strongly support me.
 But I am worried about others who seem to think that we must
eat, drink, and breathe our college.  Mind you, I am a helluva
better teacher than every one of them, and have the evals to prove
it....<img src="i/expressions/face-icon-small-happy.gif" border="0"><br>
<br>
I would be interested to hear if others have ever felt that
perceptions about a chronic condition like CF has effected them in
their jobs.

 

[thefrogprincess]

WHen I was in school it was made known that I could eat or drink whenever I needed to and could go to the bathroom whenever I needed to. This was more of an issue later, especially in high school with the bathroom thing! If the other kids said anything it was just explained that I had a medical condition and these things were required for me.

 

[kandi]

Hi There
My son with Cf is going to the eighth grade. I am not sure because all states are different but here in Georgia we can set up an IEP (indiviualized education plan). It helps out to make sure my son doesn't get counted against for missing too many days of school. It helps so if he misses days of school to make sure he has extra time to do make up work. It helps with other things at school to. Also kids with cf need extra nutrition at school So the plan helps to insure he can have two snacks during the day. Also along with them needing extra nutrition you have to deal with the cafeteria. His dietician sends a paper every year that just says my son is on high calorie/high protetin diet and it allows him to have extra portions and extra milk at the school. That really helps out. Having the school fully understand your childs situation is very important. I am not sure about your schools and other ones here but my son is the only one in our hometown that has cf.
Hope this helps out.
<img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">