The Final Hours - Continued

I already wrote about the support group debacle that rivaled the Paris attacks in stealing World Diabetes Day out from under us, so no need to rehash. Still, it’s troubling that those of us who are supposed to be united in this disease can possibly become warring factions. How the attacks on personal integrity and the seeming jealousy of others’ advocacy efforts could result in personal attacks online and in social media.

It came to my attention that there’s Another Organization who singled out the Other Organization, publically naming her on his page and accusing her of blaming the support-group-that-shall-not-be-named.  The whole thing has become a he said-she said affair, and in my opinion the Other Organization has exhibited far more integrity by steering clear of the bullshit, not engaging with trolls, and focusing on what she was meant to do. (Yes, I went there.)

Anyway, now to focus on what I need to do. Today my daughter is home for day 3 of sick-day management (what we call it in diabetes world). She is, thankfully, way better today… didn’t need any trips to the hospital for IV fluids… and I am thanking God for watching over her with me. She still has those stupid little trolls (ketones, not support groupers…hah!) (<dammit! I went there again!) we’re dealing with and, as she is not the most cooperative kid on the planet, I’ve been harassing pushing her to drink more water all morning. It’s not going great, but the optimistic momma I am keeps telling her she’s making great progress!! (Note: the ketones are trace and BGs are in range and not low anymore.)

Onward….

During Diabetes Awareness Month I wrapped the inside of our bay window in blue lights (blue is the color we use to represent) This alone is funny – since how much public can I reach on a cul de sac? Anyway, one of my neighbors thought it had something to do with Judaism – which is even funnier (at least I think so). Oh well – it looked cool anyway.

I wrote a really good letter (at least I thought so) to the mayor of our town – albeit a wee bit late – explaining who I was, why I was writing, and asking if there was even a remote chance they would light the street lamps blue for diabetes awareness month (they made them pink for breast cancer in October). I even threw in the part about the governor’s proclamation. And….. nothing. Not I’m not sure I can help you, not I’m sorry, but no…. not even an acknowledgment of my email. Not even a form response you sometimes get from politicians. I was mildly disappointed, to say the least. But, not to be deterred, I will try again next year – and I’ll start a couple of months early.

I hung a few awareness posters whenever I got a chance, and made blue ribbons for the restaurant staff to wear on World Diabetes Day –which I’m sure the customers probably assumed was for France, unless somebody actually mentioned diabetes. Oh well.

I was invited, as a parent of a T1 child in Maryland public schools, to attend a Stakeholder’s meeting to discuss school management of diabetes. I was really excited to go, anxious to hear what issues they were tackling, and eager to share my thoughts and concerns as I had heard them through the DOC. The meeting was jointly convened by the Maryland Department of Health and Mental Hygiene (DHMH), the Maryland State Department of Education (MSDE), and the Children’s National Health System.

The agenda was comprised of perspectives from the diabetes care provider, the State Board of Nursing, School Health Services, and the Parent/Family, to include management challenges, needs, and opportunities. After introductions, we broke out into workgroups made up of members from the various stakeholder groups represented that day, each to discuss a differenct focus area. Obviously I don’t need to tell you that there were a number of Very Important People in attendance that day.

The topics on task for the day included communications between Providers, Schools, and Parents regarding medication orders, the School Health Services Form for Diabetes Management, the implementation of 504 plans and IHPs, issues related to training of school nurses and other staff, the training and oversight of unlicensed persons, challenges regarding care on field trips and other school-sponsored trips, promotion and support for self-management and essentially what that looks like at each school level. Workgroups were also tasked to come up with ways to improve all of these issues, from each perspective.

Pretty exciting stuff, right? I know many of the challenges from the parent’s perspective, if not from my own experience, then from what I’ve learned in the DOC. There is a tremendous and almost breathtaking gap in diabetes management in schools from state to state. I left this meeting feeling very proud of the efforts officials in my state are making to streamline management in our school systems. I’m no dummy, though – I do know that it has as much to do with liability as it does a genuine care for the health and safety of these kids.

I met someone not long ago, who told me about a problem her child encountered with a substitute who had no idea she had diabetes. The child raised her hand multiple times to be excused to the nurse’s office because she felt low, and the substitute repeatedly told her to put her hand down until she was finished talking… actually threatening her with an MIR (our form of in-school detention) if she “interrupted” one more time. As it turned out, the child walked out of the room with the substitute yelling at her in the hall. This incident was never reported to mom, who heard about it only through her child. Imagine that, just for a moment. The culmination of this incident (which could have been potentially life-threatening had the child not stood up for herself) was a meeting with school personnel and eventually the school board (whose initial response, according to mom, was less than enthusiastically accommodating). This is a colossal problem. And – I assure you – it is a rampant problem nationwide.

So, I thought this stakeholder’s meeting was phenomenal – and I have very high hopes that other states will follow suit and close that gap in school diabetes management. I don’t know how that will happen, but had hoped that by sharing all the information I learned with that support group, that those parents in other states would be able to step up and demand similar meetings. Because I really do care.

So, I’m dedicating a single post to the Stakeholders Meeting - through my eyes – to be shared publically by anyone who wants to. Hopefully tomorrow.  Stay tuned.