Let’s Pile On Some More Frustrations

I think I’ve posted before about my experiences with Angelina’s school.  They agreed fairly reasonably to the 504 Plan that I wrote with only a few minor changes.  However, they have been totally nit-picky about the doctor’s orders and what to do about situations that aren’t specifically written into the plan.  The doctor came up with the solution, which was to write into the orders “Please call mother if any unusual circumstances or questions. she is authorized by me to verbally override these written instructions when special unforeseen circumstances arise”  Well, we have had some “special unforeseen circumstances” arise, which involved a particularly stubborn high that lasted around 24 hours starting Monday night into Tuesday afternoon.  We did a site change Tuesday morning before school and did correction, but numbers remained high and rather than pick her up from school I told her over the phone to do a temp basal.  We had run a temp basal for a while the night before with some success, but as soon as we turned it off she went right back up into the 300’s, which is also where she spent most of the morning on Tuesday.

We had a meeting scheduled this morning  (as requested by me back in December before winter break) and in attendance was the health tech, the district nurse, the district nurse supervisor, the teacher, the assistant principal, me and Angelina.  During the course of the meeting the district nurse supervisor essentially told me that they are not allowed to take orders from parents, only the dr, and if it’s not written in the dr’s orders they can’t do it.  They also denied Angelina the option of checking her blood sugar in the classroom, even though in the dr’s orders it says she is capable of independent management of her care except for calculating her insulin dose, and even that is just with supervision (she basically needs someone to double check her math and log how much insulin she’s giving herself).  Which, mind you, isn’t even really necessary because her pump does all the calculations for her and the tech essentially just writes it down, it’s more just so she has to go the office at least once a day to check in.

So, I told them (again) that I would like to see her being more independent as I think that it will solve some of the issues they are having with her being not so nice when she has to come into the office.  They refuse to budge on this issue and instead have decided that her afternoon check (before her hour long bus ride on a bus where the driver doesn’t know what to look for or what to do) isn’t necessary, so that will cut down on their involvement.   The nurse supervisor’s reasoning?  Their other diabetic students don’t check in the afternoon before getting on the bus.  And since apparently they can’t take directions from me on what to do in situations that aren’t clearly outlined in the dr’s orders they are also no longer going to call me unless her blood sugar is below 70 or over 300.

They also will no longer agree to do correction insulin outside of lunch time, even though that was another thing I fought with them about at the beginning of the year and had the dr write into the orders.  However, the nurse supervisor took the dr’s wording “Insulin for correction OR as determined and given by parent: Humalog (correction factor is 125)”  to mean that the “and given by parent” means that I have to physically give the correction, not that I give the DIRECTIONS for the correction, which is what it was actually meant to say as discussed with her dr when I had her write it into the orders.  So then the nurse supervisor says… wait for it “We don’t give extra correction with our other diabetic students.  Why do you want her getting extra correction in the afternoon anyway?”  I dunno… maybe because if her blood sugar is high it shouldn’t be?  And it’s not going to go down on it’s own.  The orders do say not to give more often than every 2 hours, which is not even the issue, and again, she’s on a pump which automatically calculates whether correction is needed based on active insulin and blood sugar levels.  Because the nurse supervisor’s next comment was “The doctor didn’t even give us a sliding scale for correction anyway.  She has the correction factor here but not at what level to give correction at.”  Except on the next page of the orders it gave the sliding scale and it started at 150.  And again… pump calculates everything. And those rates, ratios, factors change in the pump.  I’m not going to have the dr write new orders all the time because a dosage rate changed when it doesn’t really make a difference as far as the school goes.

And… I have been considering homeschooling Angelina.  I joined a local homeschool group back in November and we have been attending weekly park days with them to get to know some people and get input from others who are already homeschooling.  I’m not really ready to start her and David and I agreed that if we did it it wouldn’t be until the fall so she could finish out this school year, but after this meeting today I am ready to withdraw her.  David is worried about how the stress of being home with her all day every day and trying to actually teach her is going to effect me, but I can’t say that I’m not already stressed out with school, even though she’s in public school currently.  It will be an adjustment, for all of us, but I think the most stressful part for me now is not knowing what’s going on at school.  Or getting 10 phone calls because she’s not cooperating, and then finding out she’s not cooperating because they are doing something wrong and she knows it.  She isn’t the most communicative child and so she will often just “shut down” instead of using her words, especially if she is challenged.  Of course, the challenge with that is that she can also be manipulative and will say definitively whatever needs to be said to get her way.  It’s hard to tell when she’s actually telling the truth and when she is just trying to get her way.