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!
Tuesday, November 15, 2011
Parents appear hostile?
Ahhhh... to live the simple life. I was talking to a co-worker the other day after having had to crash the meeting at my daughters day treatment center. His wife is a school teacher who has a diabetic child in her class and he says she has no problem monitoring that childs glucose testing, and can't understand why my daughters teachers would have such an issue. I told him it wasn't so much the testing part they didn't have time for, but the monitoring of the hand washing since she has a tendency to cheat. He couldn't grasp that concept - "haven't you told her how bad it is for her to have high blood sugars?"
Uhhh... yes? Repeatedly? Some people just don't grasp what it's like living with a child who has attachment issues. And really, I don't blame them - it's not at all like raising neurotypical children and until you've lived it, you just don't know. I was reading some statistics the other night that were shocking, but not really. Not to me anyway. 77% of mothers who have adopted have experienced more intense rage/hate/anger after they adopted than before. And 14% of those adopted mothers have experienced such rage/hate/anger that they have considered suicide because of it. Those intense feelings are related to the difficulty of trying to raise an attachment disordered child. Parents of neurotypical children typically don't find themselves pushed to such a state of rage on a consistent basis that they have thoughts of killing their children - but it's not uncommon for children with attachment issues to push those buttons. It's not that they do it on purpose, and there are various views on why they do it, but the end result is still the same. Imagine living with somebody who lies and steals on a regular basis (and we aren't talking once a week regular, but sometimes multiple times in a day), somebody who fights with you every step of the way when all you're trying to do is help them heal... if that were a boyfriend/girlfriend, how long would you stick with them? Unless you're a serious masochist, probably not long. But when that person is your child you don't have that option to just kick them out - well, you do but it's not nearly as easy. Think of the frustration that would build day after day after day after day after day after....
There's a reason "parents may appear hostile".
Uhhh... yes? Repeatedly? Some people just don't grasp what it's like living with a child who has attachment issues. And really, I don't blame them - it's not at all like raising neurotypical children and until you've lived it, you just don't know. I was reading some statistics the other night that were shocking, but not really. Not to me anyway. 77% of mothers who have adopted have experienced more intense rage/hate/anger after they adopted than before. And 14% of those adopted mothers have experienced such rage/hate/anger that they have considered suicide because of it. Those intense feelings are related to the difficulty of trying to raise an attachment disordered child. Parents of neurotypical children typically don't find themselves pushed to such a state of rage on a consistent basis that they have thoughts of killing their children - but it's not uncommon for children with attachment issues to push those buttons. It's not that they do it on purpose, and there are various views on why they do it, but the end result is still the same. Imagine living with somebody who lies and steals on a regular basis (and we aren't talking once a week regular, but sometimes multiple times in a day), somebody who fights with you every step of the way when all you're trying to do is help them heal... if that were a boyfriend/girlfriend, how long would you stick with them? Unless you're a serious masochist, probably not long. But when that person is your child you don't have that option to just kick them out - well, you do but it's not nearly as easy. Think of the frustration that would build day after day after day after day after day after....
There's a reason "parents may appear hostile".
Thursday, November 10, 2011
Another day, another battle with The Man...
So the Day Treatment Center was having a meeting. About my daughter. And they didn't bother to tell me about it? I don't think so. I found out about it the same day I found out they weren't allowing my daughter to carry her diabetes testing kit. Apparently they decided that even though it was in her IEP that she needs to have her kit on her at all times, hospital rules trumped federal documents. I don't think so. So I did what any father would do and I crashed the meeting, demanding that she have access to that kit at all times. They don't have to let her keep it on her person, but it has to be in the room with her wherever she goes.
There were nurses there, and school administrators, and teachers, and hospital administrators, and a psychiatrist even, and it came down to me and one nurse vs the rest of them. The teachers and school administrator were putting up the most resistance.... "we don't have the resources to monitor her when she needs to do her finger stick". OK, granted, it's a bit of a hassle because she has a history of trying to cheat the meter and "adjust" her sugar readings to make them appear lower so she can eat sweets. But the entire process takes less than 1 minute. She's in your care and this is what needs to be done to keep her safe. Suck it up.
Eventually most of them relented. I, unfortunately, had to get back to work so had to leave the meeting early. But when I left, only two of the teachers were still grumbling about how to make this work. Not my problem, really. They will have to find a way, and the district people had come around and were already working to fix it. So I left feeling a bit satisfied how it turned out. Not 100%, but we're getting there. They still haven't managed to find a nurse to be there 5 days a week, which means my daughter can't attend school on those days when there is no nurse. It's been almost 2 weeks - I would have thought they'd have somebody by now, but they don't. That kinda pisses me off as well. I had such high hopes for this DTC. Oh well, I'm getting used to fighting to get what my daughter needs.
They also are doing another evaluation. I'm ok with that, but they asked me to complete another BASC-2 evaluation. Because of all the structure and supervision, my daughters behaviors are much better. So I emailed the evaluator and asked her if I should fill it out based on her current behaviors or base it on what she's like without all the structure/supervision - because we're looking at two completely different sets of answers. I told her I was concerned that because her behaviors were such in check right now they might get the wrong impression and put her back in a mainstream HS. Which IS the ultimate goal, but there's no way she's ready yet. The *only* reason she's doing so well is precisely because of all the structure she has right now. Take that away and we're back where we started. She got back to me pretty quickly and said to fill it out based on the last 6 months, and that she has the previous BASC-2 data and will compare the two to see what's working and where things still need improvement.
Something tells me this battle isn't over....
There were nurses there, and school administrators, and teachers, and hospital administrators, and a psychiatrist even, and it came down to me and one nurse vs the rest of them. The teachers and school administrator were putting up the most resistance.... "we don't have the resources to monitor her when she needs to do her finger stick". OK, granted, it's a bit of a hassle because she has a history of trying to cheat the meter and "adjust" her sugar readings to make them appear lower so she can eat sweets. But the entire process takes less than 1 minute. She's in your care and this is what needs to be done to keep her safe. Suck it up.
Eventually most of them relented. I, unfortunately, had to get back to work so had to leave the meeting early. But when I left, only two of the teachers were still grumbling about how to make this work. Not my problem, really. They will have to find a way, and the district people had come around and were already working to fix it. So I left feeling a bit satisfied how it turned out. Not 100%, but we're getting there. They still haven't managed to find a nurse to be there 5 days a week, which means my daughter can't attend school on those days when there is no nurse. It's been almost 2 weeks - I would have thought they'd have somebody by now, but they don't. That kinda pisses me off as well. I had such high hopes for this DTC. Oh well, I'm getting used to fighting to get what my daughter needs.
They also are doing another evaluation. I'm ok with that, but they asked me to complete another BASC-2 evaluation. Because of all the structure and supervision, my daughters behaviors are much better. So I emailed the evaluator and asked her if I should fill it out based on her current behaviors or base it on what she's like without all the structure/supervision - because we're looking at two completely different sets of answers. I told her I was concerned that because her behaviors were such in check right now they might get the wrong impression and put her back in a mainstream HS. Which IS the ultimate goal, but there's no way she's ready yet. The *only* reason she's doing so well is precisely because of all the structure she has right now. Take that away and we're back where we started. She got back to me pretty quickly and said to fill it out based on the last 6 months, and that she has the previous BASC-2 data and will compare the two to see what's working and where things still need improvement.
Something tells me this battle isn't over....
Monday, November 7, 2011
1 week into the honeymoon...
"You know what I hate about being born to you and Pam?"
That was the question my oldest daughter asked of me the other day and my mind instantly began racing. It could be so many things. The diabetes, the drugs, the Erbs palsy, the fact that her mother doesn't call, the fact that we're not together... the list goes on and on. It's amazing how many thoughts can run through your head in the span of a single second. I was prepared for anything.
"Why do I have to be so tall?"
Sometimes I think I forget that even at 16, she's still just a kid. Granted, she's just shy of 5'11, but I wasn't expecting such a simple answer to her question. 16 going on 12 is the way her case worker put it, and sometimes that shows more than others. When the biggest worry a 16 year old has is not being able to buy skull and crossbone tights because she's too tall for what they have at the store we're at, I would consider that a good thing. All in all, she's been doing really well with the move. Of course, we don't expect that to last - even the counselor at her new school slipped up next to me at the Open House last week and asked "how's the honeymoon coming?".
Does he "get it"? I don't know. Sometimes he does, other times he seems completely taken by her charm (and charming she can be!). I suppose time will tell. In the meantime we can't let our guard down. As much as we'd love to be able to relax and just let things be, we have found time and time again that doesn't work. Certainly we can take advantage of this lull and give extra privileges and extend a little more trust as we did yesterday when we were at the mall and gave her $2 cash to go buy whatever she wanted. She, of course, returned with ice cream but didn't eat it all (it WAS delicious!) and managed to keep her blood sugars from shooting sky high, so we couldn't be more happy with her behavior yesterday. But the patterns of the past, and the knowledge of how her mind works keeps us from proclaiming she's "cured".
I hope this new school will take full advantage of this honeymoon period and really help us show her how nice and rewarding good behavior can be. I know they are all bracing for when the honeymoon period ends (I'd be willing to put money on next week - I think by the end of this week she'll have em all figured out), but in the meantime we're going to try to keep it going as long as we can.
Of course, when one of our daughters is "being good", it seems to be a cue for the other to create a ton of drama, and she's certainly living up to that.
Love my girls, hate the drama....
That was the question my oldest daughter asked of me the other day and my mind instantly began racing. It could be so many things. The diabetes, the drugs, the Erbs palsy, the fact that her mother doesn't call, the fact that we're not together... the list goes on and on. It's amazing how many thoughts can run through your head in the span of a single second. I was prepared for anything.
"Why do I have to be so tall?"
Sometimes I think I forget that even at 16, she's still just a kid. Granted, she's just shy of 5'11, but I wasn't expecting such a simple answer to her question. 16 going on 12 is the way her case worker put it, and sometimes that shows more than others. When the biggest worry a 16 year old has is not being able to buy skull and crossbone tights because she's too tall for what they have at the store we're at, I would consider that a good thing. All in all, she's been doing really well with the move. Of course, we don't expect that to last - even the counselor at her new school slipped up next to me at the Open House last week and asked "how's the honeymoon coming?".
Does he "get it"? I don't know. Sometimes he does, other times he seems completely taken by her charm (and charming she can be!). I suppose time will tell. In the meantime we can't let our guard down. As much as we'd love to be able to relax and just let things be, we have found time and time again that doesn't work. Certainly we can take advantage of this lull and give extra privileges and extend a little more trust as we did yesterday when we were at the mall and gave her $2 cash to go buy whatever she wanted. She, of course, returned with ice cream but didn't eat it all (it WAS delicious!) and managed to keep her blood sugars from shooting sky high, so we couldn't be more happy with her behavior yesterday. But the patterns of the past, and the knowledge of how her mind works keeps us from proclaiming she's "cured".
I hope this new school will take full advantage of this honeymoon period and really help us show her how nice and rewarding good behavior can be. I know they are all bracing for when the honeymoon period ends (I'd be willing to put money on next week - I think by the end of this week she'll have em all figured out), but in the meantime we're going to try to keep it going as long as we can.
Of course, when one of our daughters is "being good", it seems to be a cue for the other to create a ton of drama, and she's certainly living up to that.
Love my girls, hate the drama....
Sunday, October 23, 2011
Blocking inappropriate web content
I think I'm no different than most parents when I say I wish my children would always make the right decisions. But they don't, and trying to stay two steps ahead of them at all times drives me crazy. With my youngest daughter getting to *that age*, I'm constantly asking her to change something on her Facebook page, or remove things, or whatever. I know, some parents say they would never allow their 12 year old to go on Facebook, but there are some battles that I know can't be won. If they don't do it here, they will do it somewhere else and at least this way I can keep tabs on what they are up to. Personally, I would rather attach a webcam to their head that they can't remove, but that isn't exactly practical so I do what I can to keep up with them.
Of course, an online presence presents a whole new set of issue that our parents didn't have to deal with. Cyber-bullying and pornography are the two that immediately come to mind. Making sure that I am "friends" with my kids on Facebook allow me to keep tabs on the first one, but the second one isn't quite that easy.
Last week I had some downtime at work and figured I would look into things. I did quite a bit of looking around and researching web content filters. There are a LOT of products out there that will help keep our kids from seeing inappropriate content, but I didn't want to spend any money (I just moved and really don't have it to spend if I don't have to!). Initially I considered putting a separate box with the filter on it between their computers and the Internet, forcing all their traffic to go through that. That would be the most secure and easiest to maintain since I would only have a single installation to configure. But that would require another computer to be on all the time, and although I have plenty of computers sitting around and am certainly tech-savvy enough to pull it off, I started to think about what if they took their laptop to somebody elses house? All my filtering plans would be worthless. (Of course, they could always use other peoples computers to bypass the filtering, but I can't stop that no matter what...)
Eventually what I settled on was K9 Web Protection... (http://www1.k9webprotection.com/) - the price is right (it's free!), and it does what I need it to. Not to mention, you can just install it and it works right out of the box. Of course if you want, it's highly configurable and you can set it to block all sorts of things. Another nice thing about it is that it logs all attempts to access anything that's blocked, so you can see what your child is up to. I don't ever want this blog to be in the business of product placement, but this is one utility I highly recommend!
Of course, an online presence presents a whole new set of issue that our parents didn't have to deal with. Cyber-bullying and pornography are the two that immediately come to mind. Making sure that I am "friends" with my kids on Facebook allow me to keep tabs on the first one, but the second one isn't quite that easy.
Last week I had some downtime at work and figured I would look into things. I did quite a bit of looking around and researching web content filters. There are a LOT of products out there that will help keep our kids from seeing inappropriate content, but I didn't want to spend any money (I just moved and really don't have it to spend if I don't have to!). Initially I considered putting a separate box with the filter on it between their computers and the Internet, forcing all their traffic to go through that. That would be the most secure and easiest to maintain since I would only have a single installation to configure. But that would require another computer to be on all the time, and although I have plenty of computers sitting around and am certainly tech-savvy enough to pull it off, I started to think about what if they took their laptop to somebody elses house? All my filtering plans would be worthless. (Of course, they could always use other peoples computers to bypass the filtering, but I can't stop that no matter what...)
Eventually what I settled on was K9 Web Protection... (http://www1.k9webprotection.com/) - the price is right (it's free!), and it does what I need it to. Not to mention, you can just install it and it works right out of the box. Of course if you want, it's highly configurable and you can set it to block all sorts of things. Another nice thing about it is that it logs all attempts to access anything that's blocked, so you can see what your child is up to. I don't ever want this blog to be in the business of product placement, but this is one utility I highly recommend!
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