There's one thing I don't think I'll ever understand. I mean, I do understand on a deep level, but at the same time I don't understand. Make sense? Neither does my RADs actions when it comes to diabetes management. And yet they make perfect sense.
In addition to RAD, she also has type 1 diabetes which means she has to take insulin to control her blood sugars. Anybody who has a RAD knows that they have a deep rooted need to be "in control". Which makes sense since they had to be that way in order to survive when they were younger. But when that need for control becomes potentially life threatening it's a whole new story.
Let's take a typical daily schedule - test blood sugars when you wake up, get a shot to correct sugars and cover breakfast carbohydrates. At 10am test again and correct sugars if needed so that when lunchtime comes around, your sugars aren't too high for you to eat (when she eats with sugars in excess of 175 the insulin is FAR less effective and she just remains high the rest of the day). At lunch, since the sugars should be normal, simply cover the carbohydrates you're going to eat and then retest/correct in the mid afternoon to prepare for dinner.
Sounds simple, no? One would think. But for some reason, RAD insists on correcting in the morning and covering breakfast (a good start to the day!) but then neglects to do a mid-morning test and tends to have sugars in the upper 200s or higher at lunch. Of course, being a teenager she's hungry so rather than waiting for her sugars to come down, she eats anyway and shoots her sugars super high. That requires an extra large shot in mid afternoon, which then drops her low by the time she gets home. Granted, this isn't all her fault. The school nurse *should* be coming in the morning but she doesn't (that will be addressed in the IEP next month), and the doctors orders she is working off of *need* to be changed so she's getting less insulin in the afternoons (that appointment is next week). But in the meantime, she continues to avoid mid morning testing and her sugars are so high at lunch that we suspect she's eating soon after she leaves the house in the mornings (that is the only plausible explanation we can think of for why she consistently "forgets" to do her mid morning test).
When we approach her about it, she gets really dysregulated and keeps saying "I get it", but she certainly doesn't seem to. We don't want to nag her about it, but high blood sugars now == organ failure later and no parent wants that for their child! Then there is the issue with the low blood sugars. Low numbers are more dangerous than high numbers - they can cause more immediate problems such as confusion, seizures and even death. We even had one instance where her sugars were low, she got confused, and ended up getting on the bus home in the wrong direction. We always tell her to carry raisins with her since they are a fast acting sugar source, but again - her need for control sometimes makes her "forget" those.
Thankfully her Day Treatment Center is way more on top of these things than her last school was, but we still have a long way to go. It's not easy trying to coordinate different agencies (i.e. diabetes clinic, school, etc) especially when you've already been triangulated against (as was the case with her last school when they called an ambulance for high blood sugars and refused to cancel it even after we were onsite because they believed we were abusive towards her - we're still fighting that $1,100 bill). The diabetes clinic doesn't listen to us because they, too, believe we are horrible parents. So they write up orders that we know won't work yet they think they know better, and the school nurses have no choice but to follow those orders (although we have asked them to call us because our word overrides the doctors, but in general they tend to follow what's written).
So we get to deal with this double whammy on a daily basis, with everybody pointing fingers at everybody else while RAD bounces up and down (both with her sugars and with the attention this brings her). It honestly wouldn't be so bad if she would just work WITH us instead of against us, but the RAD in her won't allow that.
Thanks RAD - I hate you (not the daughter, the disease).
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