school related trips

[skh]

My daughter is a freshman in high school. She decided just recently that she would like to start playing the flute and hopefully be able to join the school band next year. She has had private lessons since the end of December and has been doing quite well. At the beginning of March she needed to sign up for classes for next year. Not knowing if she would be able to be in band she checked with the band teacher and he had her come in and audition for him. He told her if she continues as she has been she will be ready for band in the fall. She was sooo excited and I was happy for her.

Well, now that I have given myself time to think about this I'm not sure how happy I am. I know that the band does go on a few trips throughout the year. My daughter has never left town without me or her dad. I don't know how this will impact her treatments. She is very private about her disease and her friends do not even know that she has CF.

If any of you have an insight on this for me I would sure appreciate it. I am already thinking that I will just go where ever the band goes and then she can just come to my hotel room and do her treatments. Would that be not a good thing to do? Help!!

Sue

 

[skh]

My daughter is a freshman in high school. She decided just recently that she would like to start playing the flute and hopefully be able to join the school band next year. She has had private lessons since the end of December and has been doing quite well. At the beginning of March she needed to sign up for classes for next year. Not knowing if she would be able to be in band she checked with the band teacher and he had her come in and audition for him. He told her if she continues as she has been she will be ready for band in the fall. She was sooo excited and I was happy for her.

Well, now that I have given myself time to think about this I'm not sure how happy I am. I know that the band does go on a few trips throughout the year. My daughter has never left town without me or her dad. I don't know how this will impact her treatments. She is very private about her disease and her friends do not even know that she has CF.

If any of you have an insight on this for me I would sure appreciate it. I am already thinking that I will just go where ever the band goes and then she can just come to my hotel room and do her treatments. Would that be not a good thing to do? Help!!

Sue

 

[JazzysMom]

Did you talk to your daughter about this topic? I understand her not wanting to miss it & yet wanting to keep her CF private etc. BUT I dont want her thinking she can skip her treatments & stuff in order to go. Would she find it weird to have Mom tagging along? If she isnt willing to be open about things with others & her CF then I cant see how she can do it without your help.

 

[JazzysMom]

Did you talk to your daughter about this topic? I understand her not wanting to miss it & yet wanting to keep her CF private etc. BUT I dont want her thinking she can skip her treatments & stuff in order to go. Would she find it weird to have Mom tagging along? If she isnt willing to be open about things with others & her CF then I cant see how she can do it without your help.

 

[skh]

I brought this to her attention last night. Her comment was "it's only a few times a year and it will just have to work out." By this she meant that she wouldn't need to take her treatments since the there are only a few trips and they are usually only one or two nights.

She takes treatments 2x daily and has missed one on a very rare occasion. Her dad and I are pretty clear with her that her treatments are very important and are not to be missed. But I know what it's like to be 15 and I can't imagine what it would have been like to be 15 with this disease. So I am going to try to be understanding but I will need to be strong and not give in.

I'm not sure but I think that since she was only diagnosed at age 11 and did not live with the knowledge that she had this disease from birth on has been hard on her. There have been many adjustments in her life in the past few years. But then, I think it would be hard on her no matter what.

Thank goodness I have the next five months to think about this and work on a good solution!

Sue

 

[thelizardqueen]

"Its only a few times a year and it will just have to work out"? - I'm sorry to say, but that is not a good attitude for a CFer. Our diligent treatments are what keeps us healthy, and her missing her treatments a few times a year may be detrimental to her health. Who to say that it would end here with her? - 'oh its only a few times a year', to 'oh, I don't need to do that many treatments anymore, etc'. I think its a great idea for you to tag along. Who will know what she's doing? - most likely no one. Simply fill in her band teacher so that he/she is aware of what's going on for when she is missing for a period of time doing the treatments.

 

[anonymous]

A friend of mine's son wanted to be in the dorms at the private school this year instead of commuting from home. They basically decided to let him do it (in preparation of college), provided HE STILL WOULD DO HIS TREATMENTS. Guess in his case it worked out great. He's a pretty responsible kid.

DS is only 2 1/2, but we have always done treatments 3-4 times a day and the one and ONLY time he missed a treatment was last month when we had to catch a connecting flight on the way back from Mexico. So he only got his early morning and late night treatment. We had the nebulizer along, but the time between flights got shortened, delays in customs... Just didn't work. We are just very very diligent about treatment because we feel so strongly about keeping in the habit of having good lung care. It's just not an option for us to skip it 'cuz it's inconvenient.

So on the one hand it might be a good idea to let her spread her wings and take some responsibility for her health care, cuz pretty soon I imagine she'll be going off to college or out on her own. Liza

 

[Seana30]

Courtney, who is 13, when on a trip to California with her school last year.

I was VERY nervous! She had not been away from me since diagnoses.

Courtney's friends and teacher do know about her CF, and I do not think I would have let her go if they did not. Her teachers were given strict instructions about her care, and were given a very stern talking to by me about how important her medical care was.

In my personal opinion I think you should let your daughter know that there will be no away trips unless the adults that will be caring for her know her situation. If she does not want the other kids to know then she needs to set out a plan with one of the adults to go to their private hotel room to do therapy. There are all kinds of ways that she can do her therapy and take her meds without everyone knowing.

I am a firm believe that CF should not stop Courtney from doing all the things that other kids do, but she also know that if she wants to do things, it is her responsiblity to make sure that her medical care is number one. She is in track, and she did not want her CF to be a big deal while running track. She talked with her coach and they set out a plan for her to take her meds during meets and for an inhaler to always be available. I was proud of her because she took her medical care seriously but made sure that it was not made a big deal.

I also have a 15 year old daughter who is a freshman but she does not have CF. It is such a confusing time for girls!

I hope you and your daughter are able to come to an agreement, and that she enjoys band this coming year.

Take Care

Seana

mom to
Lauren-15, no CF
Courtney-13, with CF
Cameron-10, no CF

 

[skh]

Thanks everyone for your advice.

Abby's school is aware of the fact that she has CF. I will need to sit down and talk to Abby about this and hopefully she will feel comfortable speaking to her band instructor about her medical condition. If not, then I will. I don't have a problem going where ever the band takes their trips but I think it would be good for Abby and myself to let her start being a little more independent from me.

I agree with you Seana that CF should not be allowed to hold a person back. I just need to find the right way to explain this to Abby - that while CF should not hold her back she still needs to be aware that it is a part of her life and she still needs to do all that she can to keep herself healthy.

You know, there are always hurdles to get over. We will get over this one! <img src="i/expressions/face-icon-small-happy.gif" border="0">

Sue

 

[LisaV]

Sounds like you have a handle on this.
As far as talking to the school goes, this might not be the first time they've had to work with kids on keeping some sort of treatments going during school trips. I know that when I was teaching the kids with diabetes and hemophylia went on trips and special arrangements had to made for them to have their meds and such (and handled confidentially). Also, as a teacher responsible for these trips it was essential for me to know if any of the kids had any underlying issues that might come up whether it was CF, diabetes, hemophylia, severe allergies - you name it. God forbid that something act up big time and we didn't know enough to say something useful to the ER folks.