For those with Preteens or Teens be VERY Cautious about letting them post, or even KNOW about, CWD.forums

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Permalink Reply by Zo Zo on September 29, 2009 at 6:09am

I've had a similar problem with these forums a few years ago, because there was no one to chat to on the childrens and teens bit i got into a chat in the adutls bit, and then started to become very nasty and so i left and do not and will not ever go back on those forums! These were parents of diabetics! They have been generally disrespectful with me and looks like it's still going on!

Permalink Reply by Jan on September 29, 2009 at 6:45am

These "Parents" have riped other newly diagnosed parents to shreds on the forums, which I have been avidly reading for the past four years, because there is quite a lot of information there. I used to converse on the Chat where a "Nurse/CDE/Physicians Assistant" was incredibly nasty to me about DN's blood sugar testing routine (10 X a day) and the fact that we do overnight testing. A stinging remark, one of MANY, remains in my memory, "Pardon the pun, but DN is stuck with you." Sorry, six strips a day Nurse, but I will listen to her ENDO, not some on-line CDE, trained neigh on 20 years ago, possibly even 30! I joined the forums (with trepidation) to get more answers on Apidra and cgms. Children are a little bit different than adults. Teens use more insulin than an adult ever will. So I had questions about that. But I knew what I was getting into and have a thick skin. These parents are parents of young children with D and do not want to hear anything other than teens who are managing beautifully. And she really is. Which does not mean she cannot get angry sometimes over things that happen. I am very proud of DN. Beyond proud. When I hear these parents twisting her words and baiting her, then taunting and ridiculing her, telling her she does NOT have D, is NOT a child and is, in fact, a "troll," I want to make darn sure this NEVER happens to a child again. The site is moderated. Inanane posts of mine have been read and not been allowed on. Yet the moderator allows this type of abuse? I need to have Johnson and Johnson start putting rules in place for the moderator to get on the ball. Because this should NOT be allowed to continue. P.S. I can't even go back on that site and let those parents have it, as they blocked me. I hope J&J is receptive to what I have to say because they own that site.

Permalink Reply by Natasha Bowlds on September 29, 2009 at 7:45am

Dear Jan,
This post makes me really sad for two reasons. One is the obvious reason that I'm a parent of a diabetic child and I would hate to know that not only is he at risk of misunderstanding and abuse in the "real world," but also where he might turn to for support. But also - my son was only diagnosed a year ago, and I don't think I would have made it through that year without the support of CWD - it's a group that has become very close to my heart. I've never been active on the forums, just the parents support list (email) and my family went to the Friends For Life conference this past summer, which was just amazing. The man who created CWD - Jeff Hitchcock, did so just so that his daughter (who has just now graduated from nursing school) could have other kids to talk to when she couldn't find support anywhere else. I met him at the conference and he is an amazing, gentle, concerned parent.

So anyway - I'm sure he personally doesn't monitor all the forums, since there are so many, but I know he has come on and made "statements" to forums for misusing them before, so I would contact him directly with your concern. I think he would want to know that this has happened, and would hear you out as one parent of a diabetic child to another. Not that I don't agree that you should contact Johnson and Johnson - I have no idea how websites work, or anything about the inner workings of CWD, but maybe the site has become too big to be managed by the group that was managing it, which may be exactly why they went with a corporate sponsor in the first place. Either way, Jeff could probably do something more immediate so that the likelihood of it happening to someone else is reduced.

Just my 2 cents, and I hope your daughter is able to find somewhere where she can really feel supported. It's a lonely disease when most of the world doesn't get it.

Natasha

Permalink Reply by Jan on September 29, 2009 at 10:49am

Natasha, I have been rudely treated on the Chat, monitored by hand-picked, obviously, volunteers over such issues as nighttime checks and frequencly of BS monitoring, even when we were first considering cgms. Stopped chatting because it was getting too ridiculous. I just came on the forums recently to gain more info re Apidra and cgms and have been active answering questions of others (should not have gotten sucked in, I now know). Don't know if I will continue doing so, did answer a few questions today. Jeff has removed all offending posts, no apologies made to me, no answer to my email (though I was just able to log on and send this morning). Not even completely positive it is my niece but it does sound like some of the things she would say and I think it is. I know Jeff is amazing. I just don't want any child to log on to CWD, either under the Teens or Parents and get the responses that were given to my niece (or this child) these past few days. The Parents were downright ABUSIVE on a support forum. This is inexcuseable, I am going to get to the bottom of it. I don't care how high up I have to go.

Permalink Reply by MelissaBL on September 29, 2009 at 8:16am

Jan, I'm so sorry your niece had that horrible experience. I have no experience with CWD, but I have plenty of experience dealing with aggressive parents of type 1s. To be honest, as a type 1 myself since childhood, when I find myself among parents of type 1s (with the exception of my own and many friends here), I've often in my life felt crowded out by how much "worse" their baby has it than me - even though their babies will grow up to be just like me. Whether it's a JDRF event, a forum, etc., some parents will always want a place where they can whine/vent/talk about themselves or their families... We all know parents like this in non-diabetes-related situations. They find their way into support places, too, unfortunately. As with any online space, we have to carefully monitor how kids engage it.

Once she turns 13, she may join here at TuDiabetes and I PROMISE that our administrative team (currently made up of 8 people who, in various capacities, monitor every single contribution made to the site) will make sure she has a safe space to turn to for support.

*hugs* from a type 1 who has been there

Permalink Reply by Jan on September 29, 2009 at 10:50am

Thank you. Do the moderators delete abusive posts?

Permalink Reply by MelissaBL on September 29, 2009 at 4:55pm

Yes, sometimes immediately and sometimes after discussing it among ourselves via email first if it's borderline offensive/aggressive. We take a screen capture of the offensive material (before we remove it) and keep a log for future reference in case of dispute. And we take additional follow-up steps, notifying each party that we have taken an action and reminding the offending party about our Terms of Use and our stated Values of TuDiabetes.

If a member fails to abide by our standards, our Terms of Use state that we may ban that member from the community - a decision we do not make lightly, but that we do find ourselves making. If a particular thread becomes aggressive or heated, we often just close the thread from future comments and post a message explaining why the thread is closed or delete the thread altogether.

If you ever find yourself attacked at TuDiabetes, please report it using the "Contact Us" link to send feedback. We are all volunteers ourselves, but the person assigned to feedback each month can generally get to a request within 24 hours. Regardless, every time you send feedback, we all receive your email and are made aware of the situation.

Permalink Reply by Jan on October 1, 2009 at 7:43am

I belong to another support forum for Parents of children with scoliosis, vertebral.stapling.com. At NO time has any parent been unsupportive to another member. NEVER a rude word spoken....If a child logs on, and some have, they are treated with kid gloves by the other parents. What is it about Type 1 Diabetes that makes parents different than parents of other conditions? I guess it must be the lack of sleep.... Makes for a lot of crankiness, LOL.

Permalink Reply by TuDiabetes Administration on October 1, 2009 at 9:35am

This discussion thread is being closed down and some comments of a personal or pointed nature have been removed.

One of our most important values in the community is that of Diversity and Respect. Quoting from the post "Values of TuDiabetes":
"We value diverse points of view. All people touched by diabetes are welcome. You may find opinions and positions that are not similar to yours and it's OK to disagree. It's just not OK to do so in a disrespectful manner. If you are unsure about whether something may be disrespectful to others, try to put yourself in the shoes of the other person and consider how you would feel if you were on the receiving end of the comments/contribution you are making."

We don't expect everyone to agree on everything, but let's please make sure we do so being mindful of how things come across, respecting others.

Thanks,
The TuDiabetes Administration Team