I’m so sorry to hear another family has had to go through this! WTH is up with people turning parents who diligently care for their children’s diabetes day-in-and-day-out 24/7 at the expense of their own health and at the risk of losing their jobs in to the authorities? Do they think a “good” parent is one who can magically keep their child’s BG from never going high or low? Come on, we’re talking about Type 1 autoimmune insulin-dependent diabetes here, world! This isn’t how Type 1 works; wake up, smell the insulin, and EDUCATE YOURSELVES! Geez, we’ve been treated like those whack-job parents who refuse to get treatment for a child with cancer…
right on, i can’t say, what i want to say, due a lot of thing, i won’t be here today, if i did not get treatment, i was close to dying, when i went in-to the er,.
There’s an interesting and, seemingly favorable, Appellate ruling involving a suit brought by parents and minor who had some similar issues with a school and communication and the school having reported the parents to a social service agency:
The defendants were granted summary judgment however the appellate court reversed this. I haven’t ever figured out the outcome on this, if the school tried it or settled it.
This is just so awful, what you and @Amanda_e, have experienced.
We’ve had our difficulties with administration. Caleb’s A1c is low - we keep very tight control - and I’ve worried about being accused of poor care, the exact opposite of what I believe we provide. My worry is because the care needed for a child with diabetes, particularly a young child, is misunderstood. I’ve tried to be very proactive to explain that Caleb’s care may not be what administration sees in other students, and explain why we do what we do. Although I’ve been accused many things, not ever was I accused of not properly caring for Caleb. I now consider myself fortunate I didn’t have to travel that road.
Having this worry, I was always prepared with the support of Caleb’s medical team should I need to call upon it. I am so, so sorry to hear that you did not have this same support. Knowing that you’ve changed endos, I’m wondering if you find your daughter’s new medical team to be a help in this way?
As an aside, in our difficulties with administration, they contacted Caleb’s doctor without my knowledge and misrepresented facts to him and got responses from him from those misrepresentations that they used against us. It never occurred to me that they would take the step to contact Caleb’s doctor without informing me. We have to sign a general statement each year allowing them to contact the doctor about Caleb’s care should they deem it appropriate. However, we have instructed Caleb’s doctor not to provide any information to the school administration without our consent.
I don’t meant to bust in here, but I had no idea… Had never even considered this as something that a parent of a T1 has to go through. I have T1 myself, but I am the mom of three beautiful amazing girls. The fact that any of you had to even consider this let alone walk through it is mind boggling to me. As if getting up in the middle of the night and the constant worry and keeping your child alive let alone healthy and well aren’t hard enough?! My hat goes off to all of you T1 parents!!!
I’ve been reading this thread and I have to say that I am completely overwhelmed.
As a CDE, I feel the need to address this at one of our annual meetings. I can only do that with your collaboration. In fact, I have an idea…without nominating anyone, I remember exchanging a post with an MD on this thread. Why not take a survey to assess what the parents with school aged children with type 1 diabetes need from the schools their children attend so that you all have concrete collective information so standards can be developed for school nurses and others charged with caring for your children during school hours. I can’t understand why for the life of me why nurses who chose to work in a school setting should not hold the CDE credential and have the patient-centered preparation from the perspective of parents who have children diagnosed with type 1 diabetes? I believe this is something you should all put your collective voices together in achieving.
I believe if the nurses feel it is their responsibility to involve a child protective service if s/he believes that something from a socioecological perspective is having a negative impact on blood glucose management on the part of the parents, then child protective services should have information from a socioecological perspective before the nurse makes a call that can be potentially damaging to the child, the child health, and the family.
Excuse me for being so agitated about this but it just doesn’t make sense to me for child protective services to come out to check and see that all is well based upon one phone call. I believe some type of safety net should be in place for families with children living with T1DM to reduce the likelihood of a false alarm.
That’s easy: money. With many schools not even able to afford a full-time nurse, they most certainly couldn’t afford an RN/CDE. For an example of the trouble professional involvement can cause, take a look at the battle over school nurses in California.
To be quite honest, I had enough of a fight trying to convince the school RN that she didn’t know half as much as she thought she did. I can only imagine how much worse it would’ve been if she had also been a CDE.
Clearly you have had very little exposure to child protective services. Today’s society is permeated with a degree of paranoia that dictates their behavior. You may not like it (I don’t), but it is real and wishing has no effect on reality.
The chicken-vs-egg conundrum of whether CPS creates the paranoia or the paranoia drives CPS is an open question. Personally I believe it to be a vicious circle. Regardless, it is what it is.
CPS people are relentlessly indoctrinated with the mantra that the welfare of the child trumps all other considerations. I mean, ALL other considerations: they are taught to act on the most trivial suggestion of a possible danger. Police officers are required to show probable cause; CPS people aren’t. If you want to comprehend why this crap happens, you must understand that the mindset of CPS in most places is to shoot first and ask questions later, i.e., guilty until proven innocent. That’s why horror stories like this one keep right on happening with grim regularity. And will continue to.
My son, diagnosed at age 3, currently 13, has worked with more than 15 school nurses over the years. We have worked with extremely competent nurses and, I say without exaggerating, completely incompetent ones entirely unwilling to provide any care as it relates to diabetes. One retired when confronted about her inadequate care, another was removed from my son’s school after we took legal action.
I think a school setting is a unique one for a nurse. It’s my opinion that the ones less willing to become informed and educated on the needs of a student with diabetes, expected a much less intense work environment when picking a career as a school nurse.
In general, if you are not specifically trained in diabetes care, it’s quite a lot to take in and learn. Fortunately, we’ve also worked with very professional, open-minded and caring nurses perfectly willing to prioritize the safety of our children.
@Gail12 that depends on the school. Our local district has always hired RNs for each campus.
The best care my daughter received was actually from teachers who volunteered to be trained as UDCAs (Unlicensed Diabetes Care Assistants, provided for under our state laws).
Bless you, jojeegirl, for this post. I feel supported and validated. Thank you!
For more outraged reading, please see my “School Is At Again!” thread. Is there something in the air here in the Pacific Northwest these days with Amanda being turned in to the authorities a few days ago and my daughter’s public school stirring up more D-trouble for my daughter and I today?!?!? I feel like the little girl in the film “Poltergeist” when she looks at the static on her television and says “THEY’RE BACK!”
Lorraine, thank you for sharing this post, especially the following:
This same thing happened to me the first time I was turned in to CSD. They contacted my daughter’s Pediatric Endocrinologist before informing me. Which turned out to be disastrous because the “support” we received from my daughter’s endo consisted of her telling the Authorities that she “Didn’t want to get in the middle of it.” Thanks to you, Lorraine, I am going to contact my daughter’s new endo and instruct her not to provide any information to the school without my consent.
Thank you for your honest and candid posts, especially you Amanda. I don’t know what I would do if I were in your shoes. I am so happy that Tu Diabetes is here to hold your hand with this current challenge. I hope with all my heart for the very best outcome.
As I mentioned I haven’t been diagnosed with diabetes nor does my son have diabetes. However, I thank you all for sharing your experiences with me.
Your experiences help be me a more empathetic CDE.
As a mom, I am at a loss for words after reading what many of you have experienced as a consequence of what I define as clinician overzealousness.
You’re not kidding, David. We had a visit from CPS once because a neighbour “heard yelling” from our home. Fortunately, it was a one-and-done stop, and we were left alone after that. I personally know of a family that ended up spending upwards of $200,000 to fight an unwarranted action taken by and overzealous CPS agent. Fortunately, they were able to afford to fight - not everyone can.
The sad part about it is that with all these horror stories, every day there are cases of real and obvious child abuse that gets overlooked by those same overworked CPS agents. Frequently those come from cases where multiple complaints were filed and ignored or “found to be false.” just as frequently, though cases of real abuse have other factors (like dangerous neighbourhoods, etc.) that make agents reluctant to get too involved. Cases of children with T1 diabetes become - to them - “low hanging fruit” to demonstrate that they’re “doing their jobs.” — even though, clearly, they are not.
