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Subject: [IP] Re: Kids, pumps and camp

Title: Subject: [IP] Re: Kids, pumps and camp

    I think what the biggest problem is that this was a DIABETIC CAMP for kid's. ALL diabetic kid's, not just kid's on injections. It is prejudiced to exclude the kid's on pumps, even if they were in the minority. Insulin pumps are not a new technology, nor are they going away. More and more diabetics are switching over to the better way of treatment. They are behind in they're thinking if they have no education on pumps, and think they wouldn't come across such a situation. The DCCT findings should have been a clue as to the direction treatment of this disease is heading. The more obscene aspect of the situation was that they refused to be trained in pumps, until calls were made, news publications were contacted, and they were forced to re-think there position.

    I have a five year old daughter that is also IDDM. She is starting the pump this month. She has been going to a local YMCA each year for camp. She was DX'd 12/99, so this year we debated sending her. My daughter loves this camp, and her friends go there, but it isn't a diabetic camp. We decided that since they have an EMT on site, we weren't going to deny her this. We want to teach her even though she is diabetic, she is no different then anyone else. She should not be denied something that is available to other kid's just because she has this. We spoke to the husband and wife team that run the camp at an orientation, and they advised it wasn't a problem. Unfortunately, it was. They didn't take it seriously. My wife tried to educate them prior to the start of camp, and they kept delaying the presentation. My wife spoke to several people in authority over them, and they finally made time to hear us. The EMT and the counselor my daughter had was not there though! To make a very long story short, my daughter had a few low reactions, they over-treated her and didn't follow the explicit instructions we gave them. We contacted the head of the YMCA, and we are at an impasse with them now. They tried to dissuade us from coming back next year, but when we advised that it would be illegal to deny her from attending (discrimination, based on disability), and because they receive Federal funding, they will have to provide adequate medical care, they haven't said much, hoping we'll go away quietly. Some would say why bother, or she would be safer in a diabetic camp (except the one @ Friends Academy that the two boys with pumps were denied entry), but it's the principal of it. If my daughter was in a wheelchair, on Ritalin, asthmatic, or epileptic, they would build ramps and administer meds worried they might have a lawsuit. Diabetes should not be a leper society where we need to only interact with each other, in an environment where specialized medical personnel are. That's how you keep it an unknowing disease. The other disabilities pushed it in everyone's face so they would not be discriminated, and can live normal lives. I want to teach my daughter she has no limitations so she doesn't end up not trying. She will have to monitor herself well, wear the medical tags, and tell those she interacts with of her condition. If they run a camp for children to attend, it should be for ALL children, especially if they have an EMT on site. There was nothing they needed to do to have my daughter attend, other than listen to what we had to say, and follow the instructions. We even offered to have a CDE train them for the pump. The Diabetic Teams are more than willing to train schools / camps / and other lay people free of charge. Most will be happy to receive the free training, however, others are lazy and bothered by this, because it's such a small population for a disability, and they do not know they are discriminating unless you point it out to them. The Diabetic camps are great, don't get me wrong. I do not have any close to where I live. My daughter is too young, I feel to go to sleep away camp, especially out of state. They are also very expensive. I also do not want to teach her she must only fraternize with diabetics. There is no reason she can't attend any camp she chooses. If you let them win, we will always be turned away and discriminated.


Date: Thu, 27 Jul 2000 18:51:16 EDT
From: email @ redacted
Subject: [IP] Re: Kids, pumps and camp

Sadly, most smaller camps(and some larger ones..camp Joslin two years ago
comes to mind) really aren't equipped to handle insulin pumps. My solution
has been to volunteer as a counselor in a different group than the ones my
children have been assigned to. I've done some pump education with the staff
on an as needed basis. We also have student nurses who help and I sat with
the one assigned to my son and gave her a very good lesson in pumps.
Hopefully she takes what I've told her back with her and passes it along.  I
even told her that if she EVER works in an ER and a person with D comes in,
they should get permission to call their endos and follow the instructions
they're given and to NOT remove their insulin pumps, if they have one.

JDF would have very little say in a camp run by private sources.Ours is
United Way funded and the JDF and ADA have no say. They can voluntarily
follow the guidelines, but cannot be forced to. Our camp reserves the right
to turn children away for behavioral or safety issues.

Your friends should be greatful the nurse was honest enough to admit her
ignorance and not risk harming their child. If volunteering is an option,
they should in some capacity next year.They may allow the child to stay while
at the same time having what we call at our camp a 'teachable moment". I know
alot of people at our camp were very nervous about Chris' pump last year, but
this year they also had two other kids with pumps there. Part of this is just
fear of the unknown and sometimes allowing people to learn is the best route.

Hope this helps,

Mary DeMello
Chris 10 dx'd @4, pump 2 years
Angela 11 dx'd @ 9,
Jay 13, and Liz 15