So we recently moved, and things have been going smoother for the most part. Sure, there have been meltdowns and the occasional blow-up, but for the most part my oldest daughter has come a long way. But that isn't to say things have been perfect.. not by a long shot. Recently she just went through yet ANOTHER period where we couldn't bring her blood sugars up. This was the third time this has happened in the past 2 months. Having her insulin stored in a locked box isn't enough. Before we moved, we had to keep that locked box in a locked room and never EVER let the keys out of our sight.
It's not easy being the parent of a child with RAD. She *knows* what will happen if she gets too much insulin. She *knows* why we keep it locked up and away from her. She *knows* we do everything we can to help keep herself safe and healthy. But none of that matters when the need for control hits. S/He who controls the insulin, controls the world! (and we all know RAD is about control).
But.. this wasn't meant to be an insulin control post. No... rather the reaction I got yesterday at work. The wife had called and, yet again, had found a syringe in a place where none should have been. This was the day after we had 12 hours of unexplained low blood sugars. So we decided to move ahead with something we had talked about since we got here. We can't install locks on these doors, so I went to Home Depot and picked up some door alarms. Co-worker saw them and asked about them so I told him - they are for my daughters door since we can't lock her in.
I forget not everybody lives in RADLand...
As soon as I saw the look on his face when I said that I though "oh shit" to myself... I knew I was going to have to explain just *why* I felt the need to lock my 16 year old daughter up at night, why she doesn't just do the things she knows will keep her healthy and safe. Why why why... I get so tired of explaining - sometimes it's just easier to have people think we're horrible, evil, controlling parents.. that yes, we became parents just so we'd be able to satisfy our sadistic desires to lock up our children, starve them, and never EVER allow them to have any fun.
RAD is so complex, there are so many levels to it, that it's almost impossible to explain in just a few minutes. At least not without leaving lots and lots of questions. I tried to give a quick explanation to this guy and he just didn't get it. Much like the last guy who didn't get why my daughter would mess with her insulin/blood sugars - after all, doesn't she understand? Didn't we explain it to her?
HAH! If parenting a RAD was so easy, there wouldn't be blog after blog after support group after website dedicated to it. Reminds me of the family therapist we were seeing a few years ago when we were losing our minds trying to figure out wtf was going on with our children... "well, can't you just ASK them to do <insert whatever here>?".. hahahaha... yes, we ask and they comply .. we explain and they understand (actually, they really DO understand - they are smart girls - but understanding does not equal compliance!).
The scary thing is I see the younger daughter moving down that same path, only with more anger issues. Now that I'm finally getting a grasp on RAD, it's time to deal with ODD - and that's not going to be easy. Thankfully I've found a great therapist for her, one who has raised two RAD / ODD children of her own so she has that "been there, done that" quality - will save a lot of time and frustration. The good thing is, the younger one actually WANTS to go... but she seems to think she's going to be able to convince the therapists that she needs our dog to be her "emotional support" service dog and get to take her everywhere... I can just see where this is headed....
Friday, December 30, 2011
Sunday, December 25, 2011
Christmas healing
Well it's Christmas morning, and the weeks leading up to it have been probably the most calm that I can remember. It's not unusual for parents of RAD children to hate the holidays. Most other parents that I've spoken with truly dread Christmastime. It's a time when these children can create the most havoc, cause the most uproar and the most hurt. When a child doesn't feel worthy of being loved, Christmas seems to really freak them out. Whether it's because some of them learned to associate gifts with "bad things" happening, or they just don't believe somebody can actually show them love and giving without an ulterior motive, or any number of possible trauma related scenarios, children with RAD have a habit of ruining Christmas.
Not so this year for us. We actually had minimal problems this year (compared to past years) - although the kids didn't really go out of their way to express any "Christmas cheer" or helpfulness, neither did they go out of their way to ruin things for us just so they could make things go their way. Perhaps it's because they get it that we just moved and don't have a ton of money for presents... perhaps they're just older and are learning to appreciate what they have (ok, that's hard to say with a straight face)... Whatever the reason, I like to think it's all part of the bigger picture I've seen lately with them healing. In general, we haven't had as many issues lately (that's not to say we haven't had LOTS, we have... just not "as many"), and although the big ones are still just as horrific, there just seems to be fewer smaller ones..
If all I get for Christmas is some healing for my children, that's all the gift I need.... Hope your Christmas is as wonderful as ours!
Not so this year for us. We actually had minimal problems this year (compared to past years) - although the kids didn't really go out of their way to express any "Christmas cheer" or helpfulness, neither did they go out of their way to ruin things for us just so they could make things go their way. Perhaps it's because they get it that we just moved and don't have a ton of money for presents... perhaps they're just older and are learning to appreciate what they have (ok, that's hard to say with a straight face)... Whatever the reason, I like to think it's all part of the bigger picture I've seen lately with them healing. In general, we haven't had as many issues lately (that's not to say we haven't had LOTS, we have... just not "as many"), and although the big ones are still just as horrific, there just seems to be fewer smaller ones..
If all I get for Christmas is some healing for my children, that's all the gift I need.... Hope your Christmas is as wonderful as ours!
Monday, December 19, 2011
CRI'd counselors
Sometimes we're blessed and run into people that truly "get it". It's those people that make our daily routine easier, or just easier in general - especially when things get rough. I know when I run into those people I try to really appreciate them and their presence, because they don't come along often. The counselors at my daughters DTC are NOT those people.
They started off ok, saying things like "you're the experts on your daughter" and stuff like that, but I knew when we heard "we really don't know anything about diabetes but..." that it was going to be all down hill from there. Sure, their advice would work if we didn't have that particular issue in the mix - it certainly complicates things. But these guys are of the "know it all" variety and think they are Gods gifts to troubled children. Sure, if we weren't dealing with the diabetes we COULD let our daughter experience natural consequences, but we are so we can't. And yes, we do know that she uses her diabetes as a control game and that 90% of our meetings involve discussions about the diabetes, but it's our job as parents to keep her safe.
It wouldn't be so bad if these two weren't so damn smug about it. They really irk me for that reason. When I pointed out that for the past 5 years or so we have had CPS and the doctors jumping down our necks demanding that we do "anything you have to do to keep her safe, no matter what", this advice of "you need to let her do her thing and experience the consequences now while she's still young" just doesn't fly. I'm sorry, but we know *exactly* what happens when we "let her do her thing", and it invariably involves dangerously high or low blood sugars - to the point where she's on the brink of death at times.
And the worst part is, this guy is so smug he actually believes he can get all of "the agencies" together, in one room, to agree on his approach... uhh yeah, I'll believe it when I see it. If he can get CPS to agree that it's ok for us to allow our daughter to lapse into a coma, and the doctors to agree that the organ damage done as a result of consistently high blood sugars is really not such a bad thing after all, then perhaps we'll be a little more receptive to his approach. But until he manages to do that he is going to see us, as many of them do, simply as hostile, uncooperative parents.
He's not the one who spends night after night of little sleep because of the fear that his daughters blood sugars won't come up. He's not the one facing the prospect of having his daughter go blind at a young age due to diabetic complications. It's not his issue if she has a heart attack at age 25 or loses a foot at age 30 - he'll be done with her by then. But we won't. We won't ever stop worrying or caring for her, and letting her "experience natural consequences" now only means those other "natural consequences" are likely to happen sooner.
But, like he said - they don't understand diabetes. Well Mr Counselor guys - you're about to get an education!
They started off ok, saying things like "you're the experts on your daughter" and stuff like that, but I knew when we heard "we really don't know anything about diabetes but..." that it was going to be all down hill from there. Sure, their advice would work if we didn't have that particular issue in the mix - it certainly complicates things. But these guys are of the "know it all" variety and think they are Gods gifts to troubled children. Sure, if we weren't dealing with the diabetes we COULD let our daughter experience natural consequences, but we are so we can't. And yes, we do know that she uses her diabetes as a control game and that 90% of our meetings involve discussions about the diabetes, but it's our job as parents to keep her safe.
It wouldn't be so bad if these two weren't so damn smug about it. They really irk me for that reason. When I pointed out that for the past 5 years or so we have had CPS and the doctors jumping down our necks demanding that we do "anything you have to do to keep her safe, no matter what", this advice of "you need to let her do her thing and experience the consequences now while she's still young" just doesn't fly. I'm sorry, but we know *exactly* what happens when we "let her do her thing", and it invariably involves dangerously high or low blood sugars - to the point where she's on the brink of death at times.
And the worst part is, this guy is so smug he actually believes he can get all of "the agencies" together, in one room, to agree on his approach... uhh yeah, I'll believe it when I see it. If he can get CPS to agree that it's ok for us to allow our daughter to lapse into a coma, and the doctors to agree that the organ damage done as a result of consistently high blood sugars is really not such a bad thing after all, then perhaps we'll be a little more receptive to his approach. But until he manages to do that he is going to see us, as many of them do, simply as hostile, uncooperative parents.
He's not the one who spends night after night of little sleep because of the fear that his daughters blood sugars won't come up. He's not the one facing the prospect of having his daughter go blind at a young age due to diabetic complications. It's not his issue if she has a heart attack at age 25 or loses a foot at age 30 - he'll be done with her by then. But we won't. We won't ever stop worrying or caring for her, and letting her "experience natural consequences" now only means those other "natural consequences" are likely to happen sooner.
But, like he said - they don't understand diabetes. Well Mr Counselor guys - you're about to get an education!
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