I think one of the more frustrating things about RAD is the intensity of the childs “need” for control. Oftentimes, I don’t think they are doing it on purpose, but I can’t imagine what else they are thinking. Let’s take my oldest. She has both type-1 diabetes (insulin dependant) and RAD… NOT a good combination!
Since one of the easiest things for children in general to control is their food, it’s not uncommon to have food “battles” from time to time. But with a diabetic, that “control” can have disastrous consequences if it’s allowed to run amok. I’ve spoken with other parents who have children with type-1 diabetes and they all tell the tales of food battles and the daily drama of trying to help their teenager maintain their blood sugars.
So… teens in general can use food as a control issue
Children with diabetes can ramp up that as a controlling issue simply because they can
Now add RAD, which comes with a deep rooted NEED for control at any cost, and you can imagine (or probably not, but you’re welcome to try!) the daily battles that are fought.
“Pick your battles” we are told often. Sure, believe it or not we do. Have a nighttime accident? Whatever – just clean it up. Don’t want to do your chores? OK, that’s your choice but you aren’t getting desert if they aren’t done. We’re not going to fight over that.
But when it becomes a battle that has potentially fatal consequences, that is one we have to fight. Whether we want to or not. And she knows this.
At her age, she SHOULD be able to handle her diabetes appropriately. Not perfectly, appropriately. There is a difference and we recognize that. Her diabetes doctor and nurse often tell us we shouldn’t be so “controlling” over it, that she’s certainly old enough to handle it. But they aren’t familiar with her RAD – they know of her what she lets them know when they see her once every three months. And that includes years of triangulation efforts. So they don’t really know her.
We really wish we COULD back off and give her space to handle it herself. We WANT to not have to lord over her and check and double check that she has done what she needs to do to keep herself safe, but again we’re back at that darn control issue. If she can keep us dancing around her diabetes, that puts her in control. Even though it sends the message she’s not ready to have the control, which ultimately removes the control from her resulting in even more intense control battles. A downward spiral for sure.
To those who wonder how bad it could be to give her a little more control over it since that’s what she desires? Let’s take an example from the other day. She is supposed to check her blood glucose levels at lunchtime, and again before she leaves the day treatment center. This allows her to determine whether she needs insulin or a snack. On this particular day, her case manager went home early which gave our daughter the opportunity to take things into her own hands. So she didn’t test before leaving school (“I have the power to control whether I test or not”) and, because she didn’t get the message that my wife was going to pick her up from the library, she went to the local dog park where she thought she was supposed to meet.
For those who aren’t familiar with diabetes, people with a working pancreas tend to have blood sugars that range between 90 and 120. I personally can feel it when I drop below 90.. when I hit the mid 70s I start to get a little cranky, and when I drop below 70 I find it hard to think. On this particular day, when my wife (who wasn’t going to go to the dog park but decided to at the last minute) found my daughter there, she asked her to test her glucose (we always do when she comes home so we know how to plan our dinner). At first she was resistant and didn’t want to test (more control anybody?). Eventually she relented and it turns out her glucose was at 51 and dropping. I’ve seen her drop to the mid 20s and still be able to talk. I have also seen her drop so low that she can’t walk or speak coherently, and once she had such low sugars that she got on a bus heading in the wrong direction. Had my wife not changed her mind and gone to the dog park, our daughter would have been walking around, with her blood sugars dropping and without her emergency carbohydrates on her (she usually carries around a bag of raisins, but frequently ‘forgets’ them. In this case, she actually DID have them with her, but didn’t realize it because her sugars were too low for her to think clearly). By the time she would have realized my wife wasn’t coming to pick her up, she would have easily been in the low 40s. Then, she would have had to make the 11 block walk home, which would have dropped her into the 20’s and the possibility that she wouldn’t have made it home at all (passing out along the way) would have been very real.
If this were an isolated incident, we wouldn’t worry about it. But it’s a pattern. A pattern those who say “just give her more control over it” don’t see. A pattern that that, quite honestly, scares the crap out of me. And those people who say “give her more control”, well they aren’t the ones who would be subjected to yet another CPS investigation if she were to end up in the hospital yet again. They aren’t the ones who would have to live with themselves if something were to happen to her because they didn’t do everything they could to keep her safe. We are. And it takes its toll…
She wants X (more control), We want X (for her to have more control). So why must she fight us every step of the way? Why can’t she see that if she were just to do things our way, that she would get what she wants (control) without all the drama, headache, heartache, and bad feelings. Oh yeah, RADs have to do it their way. No matter the cost.
*sigh*
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