Hi, My 4 yr. old daughter w/cf just started swimming lessons and there was no place to mention medical conditions on the form. Because I sit by the pool I was not going to say anything because I didn't think it was relevant to anything. Strangely enough, as she was getting out of the pool, I felt compelled to tell the coach, so I did. Is this the right thing to do, especially if I am with her? I don't want anyone treating her differently because of her CF but I also feel they should know. What is your opinion on this? As she gets older she will be left alone, but by then it will be her decision if coaches etc should know. Just wondering what other parents do in these situations. For older CF patients when do you tell people?Thanks
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Coaches
- Thread starter anonymous
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AbsintheSorrow
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I tell anyone who asks. There will be a time in her life where it's apparent, and some people will treat her differently... but if these people do that, do you really want her to be friends with them anyway? It's nothing to be ashamed of. It's part of who she is. Don't feel like you have to hide it... I made a longer post a few days ago regarding this... I don't feel copying it here is necessary, but it might help you to read it. I think it has some important points.. check it out. http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=727
It's a good idea to let folks know. Most people don't treat you different because they see that you are a normal person, but it's good to let them know that there may be times when you have special needs. As far as swimming and extra curricular activities, it's always good so that if there's an emergency (even not CF related), the adult in charge knows. I tell professors during the first week of class so that they understand that I may be absent from class more often than someone else. I've always been 100 percent open. When I meet new people, after I cough a few times, they usually ask if I have a cold and I just tell 'em. Also, you are continuing to educate people, which is always a good thing.I swam on a swim team when I was 5-7 years. It's really good for the lungs.Debbie 23 w/ CF
When Emily was little, we were pretty open with everyone about the CF because we figured the more people that knew, the better her care would be. We wanted to be sure if there was ever a problem, that whoever was with her had all the information they needed for her to get the right care. There were several times when an ambulance had to be called for her when she was small and having all info on her was important. We have never hidden the CF because public awareness has always been a HUGE issue for us. We were booted out of movie theatres when she was little and (if you can believe it) even driven away from a church because of her coughing.Oh well, there will always be those who don't want to learn or try to understand!
Yes, it is important for the coach or teacher to know, especially right now when she is 4 and is not going to go up to the coach and say I have CF. It is important in case something happens and in an emergency has to go to the hospital, they HAVE to know. As they say knowledge is power. When you are not holding her hand to take her to meet her new teacher, or whenever you feel like she is beginning to have her own life, like she is beginning to do little things without your assistance or guidence, you can probably trust her to tell her teachers on her own. I'd have a chat with her to tell her how important her disease is though and to urge her to let the important people in her life know (friends, teachers, etc...). I haven't really had a problem telling people I have CF, since everybody pretty much knows now that I've had a double lung transplant. But before all this attention, I told people when I felt like they knew me well enough they should know. I told my teachers and my friends. They didn't understand but when I told them what it was they were pretty understanding... So a good knowledge of CF is also a good thing to have. Well I look up now and I've written a lot more than what I was going to, so I'm just going to stop here. Good Luck.
I took swimming lessons until i was 12 and was treated "normal" until i got to one level, and they failed me for not breathing the right way. They said that when i turn for air i take too big of breathes, ha ha ha, BITE ME i say. I think it is important for the instructor to know that she has a lung condition incase she gets tired out while swimming and can't make it back to the edge, or if she starts having a coughing fit in the pool (don't know if she does that yet), i only say it is a good idea because the instructor would be a life guard and would have a swim suit and be able to jump in a grab her FAST. The only problem also is that the pool people might suggest putting her into a "special class", for handicap kids. I would FIGHT that one to the death, because she is not handicapped it is just something to watch out for.