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!
Wednesday, October 12, 2011
Educating the clueless...
The night before I moved two states away and brought my younger daughter with me, her and her older sister got into a bit of a fight. The younger one was left bruised and, as instructed by the older daughters case worker, we called SFPD. Now, violent behavior is not typical with my oldest daughter - she is actually anything but. But I guess the stress of my moving with the other daughter and her staying behind (albiet temporary while her and the wife finished packing up the place) was too much for her. Considering I'm the one she's most attached to and I was leaving her behind, I can see why that would cause her to act out. (But it does seem to have paid off)
Anyway, the cop arrived and I explained to him what happened. He wanted to know if she was violent so I began to try and explain to him her issues. He pretty much shut me down saying he didn't believe in "all those therapists and their diagnoses", claiming she "sounds like pretty much every teenager". He then proceeded to "talk" to her. And by "talk" I mean give her a 15 minute lecture on how "it isn't ok and the next time the officer might not be so nice, and in Washington things might be different and blah blah blah". I was watching and could literally pinpoint the moment when she tuned him out. Was at most, 3 minutes into his speech.
I couldn't help but shake my head and think about how useless he was. He left, all smug and convinced he had made a difference, but he accomplished nothing except in his own head. If it never happens again, it certainly won't be because of him.
Fast forward a week. I'm two states away enrolling my oldest in school. The local High School is 1100 students and I'm signing the consent form for them to get my daughters psych eval from her Day Treatment Center when I see the counselor. She's heading into her office and I slip in behind her just as she's closing the door, telling her I need to chat with her about my daughter. She has apparently already spoken with my daughters case manager and read the I.E.P., although she (obviously) hasn't seen the eval yet. So I express my concerns - that 1100 students is FAR to large a school, my daughter will get lost and give up. That she needs more individual attention. That emotionally she's about 10 years old but with the body of a 16 year old which is a dangerous combination. That she bases her self worth on how much attention she can get from boys, and is too naive to protect herself. I could tell she sort of got it, but not really.
So I asked her if she was familiar with attachment disorder.
And got a blank stare.
She then proceeded to tell me they have a great special ed program at the school that they actually bus students into from all over the district. That it's a "school within a school" where the students can go when they are feeling overwhelmed or out of sorts, but they do integrate them into the regular classrooms as much as possible.
That isn't going to work. I know exactly what is going to happen. My daughter will get there, become overwhelmed, she'll make sure her blood sugars are so high that she can't focus, which helps her not have to deal with the things that overwhelm her, and she will begin the same downward spiral that I fought so very hard to break her out of by getting her into the DTC in the first place. I tried to explain this to the counselor and got nowhere. "We have a nurse that will come in and help her with her blood sugars"... uhh..hello? She's had "a nurse come in and help her with her blood sugars" ever since kindergarten. If that was the answer, I wouldn't be in this womans office in the first place.
So what do these two experiences have in common? Simple... the world needs more education with special needs children. I know, I know.. people don't want to learn about things that make them uncomfortable or don't benefit them. Special needs children are not typically the kinds of things that make people feel all warm and cozy inside, so human nature tends to try and put them out of their mind. Once you learn about something, you tend to recognize it and see it. Special needs children can be depressing - after all, they're just children and they are going through so much. That's sad. If that doesn't break your heart, well.. I dunno what to say about you. And who wants to go through life seeing sadness everywhere? Not many people. So they become good at tuning it out, and resist knowing more about it.
But it has to be done. There are no cookie-cutter children, they aren't robots, they are innocent children who need our help because they can't do it on their own. And yet, many of the people tasked with helping them seem to turn a blind eye to their individual difficulties and treat them as though they are all cut from the same cloth. It's time we, as parents, stand up and educate them. Mental health issues in children need to be addressed and faced. Even if you can't do much, you can do something. Even if it's something as simple as "accidentally" leaving a website up on a computer at the library, or leaving a book out. Join a support group if you have any nearby (strength in numbers ya know), or attend school district counsel meetings. Maybe, even just go in and have a chat with the school counselor.
We may leave frustrated, but eventually we can win. And when we win, our children win.
Anyway, the cop arrived and I explained to him what happened. He wanted to know if she was violent so I began to try and explain to him her issues. He pretty much shut me down saying he didn't believe in "all those therapists and their diagnoses", claiming she "sounds like pretty much every teenager". He then proceeded to "talk" to her. And by "talk" I mean give her a 15 minute lecture on how "it isn't ok and the next time the officer might not be so nice, and in Washington things might be different and blah blah blah". I was watching and could literally pinpoint the moment when she tuned him out. Was at most, 3 minutes into his speech.
I couldn't help but shake my head and think about how useless he was. He left, all smug and convinced he had made a difference, but he accomplished nothing except in his own head. If it never happens again, it certainly won't be because of him.
Fast forward a week. I'm two states away enrolling my oldest in school. The local High School is 1100 students and I'm signing the consent form for them to get my daughters psych eval from her Day Treatment Center when I see the counselor. She's heading into her office and I slip in behind her just as she's closing the door, telling her I need to chat with her about my daughter. She has apparently already spoken with my daughters case manager and read the I.E.P., although she (obviously) hasn't seen the eval yet. So I express my concerns - that 1100 students is FAR to large a school, my daughter will get lost and give up. That she needs more individual attention. That emotionally she's about 10 years old but with the body of a 16 year old which is a dangerous combination. That she bases her self worth on how much attention she can get from boys, and is too naive to protect herself. I could tell she sort of got it, but not really.
So I asked her if she was familiar with attachment disorder.
And got a blank stare.
She then proceeded to tell me they have a great special ed program at the school that they actually bus students into from all over the district. That it's a "school within a school" where the students can go when they are feeling overwhelmed or out of sorts, but they do integrate them into the regular classrooms as much as possible.
That isn't going to work. I know exactly what is going to happen. My daughter will get there, become overwhelmed, she'll make sure her blood sugars are so high that she can't focus, which helps her not have to deal with the things that overwhelm her, and she will begin the same downward spiral that I fought so very hard to break her out of by getting her into the DTC in the first place. I tried to explain this to the counselor and got nowhere. "We have a nurse that will come in and help her with her blood sugars"... uhh..hello? She's had "a nurse come in and help her with her blood sugars" ever since kindergarten. If that was the answer, I wouldn't be in this womans office in the first place.
So what do these two experiences have in common? Simple... the world needs more education with special needs children. I know, I know.. people don't want to learn about things that make them uncomfortable or don't benefit them. Special needs children are not typically the kinds of things that make people feel all warm and cozy inside, so human nature tends to try and put them out of their mind. Once you learn about something, you tend to recognize it and see it. Special needs children can be depressing - after all, they're just children and they are going through so much. That's sad. If that doesn't break your heart, well.. I dunno what to say about you. And who wants to go through life seeing sadness everywhere? Not many people. So they become good at tuning it out, and resist knowing more about it.
But it has to be done. There are no cookie-cutter children, they aren't robots, they are innocent children who need our help because they can't do it on their own. And yet, many of the people tasked with helping them seem to turn a blind eye to their individual difficulties and treat them as though they are all cut from the same cloth. It's time we, as parents, stand up and educate them. Mental health issues in children need to be addressed and faced. Even if you can't do much, you can do something. Even if it's something as simple as "accidentally" leaving a website up on a computer at the library, or leaving a book out. Join a support group if you have any nearby (strength in numbers ya know), or attend school district counsel meetings. Maybe, even just go in and have a chat with the school counselor.
We may leave frustrated, but eventually we can win. And when we win, our children win.
Tuesday, October 11, 2011
Moonbeam Jerry does right by children with autism...
I am Governor Jerry Brown
My aura smiles
And never frowns
Soon I will be president...
Ahhh.... Even though I'm now all "grown up", I still love the Dead Kennedys. And having Jerry Brown as the governor of California again has caused me to pull out all the old stuff (although now I have it on CD instead of vinyl). It was easy to make fun of him back then - after all, I was a teenager and knew everything!
But he just signed a bill forcing insurance companies to provide coverage for children with autism and other developmental disabilities, and I find myself thinking he's not such a clown after all. Currently in California, insurers can deny coverage for developmental disabilities because they are classified as an "education" service. This all changes next July! Although neither of my children suffer from autism, I am ecstatic for those parents who will be helped by this.
When I first started this blog, I really delved into the world of Special Needs Parenting blogs, and a vast majority of them are by parents dealing with autism. I had *no clue* how common this problem was (and is), despite a family member being affected by it, and it makes me sad.
I am no longer the young punk who just wanted to play his music and ignore the world - I want to make a difference. In my life, my childrens lives, and the lives of those around me. But although I can fight and kick and scream for change, I'm no politician. I don't have the power they do. And although the punk rocker inside me still dislikes "the establishment", I at least feel better knowing that at least one of them has taken a step forward to provide help for the children who need it the most.
Go Moonbeam!
My aura smiles
And never frowns
Soon I will be president...
Ahhh.... Even though I'm now all "grown up", I still love the Dead Kennedys. And having Jerry Brown as the governor of California again has caused me to pull out all the old stuff (although now I have it on CD instead of vinyl). It was easy to make fun of him back then - after all, I was a teenager and knew everything!
But he just signed a bill forcing insurance companies to provide coverage for children with autism and other developmental disabilities, and I find myself thinking he's not such a clown after all. Currently in California, insurers can deny coverage for developmental disabilities because they are classified as an "education" service. This all changes next July! Although neither of my children suffer from autism, I am ecstatic for those parents who will be helped by this.
When I first started this blog, I really delved into the world of Special Needs Parenting blogs, and a vast majority of them are by parents dealing with autism. I had *no clue* how common this problem was (and is), despite a family member being affected by it, and it makes me sad.
I am no longer the young punk who just wanted to play his music and ignore the world - I want to make a difference. In my life, my childrens lives, and the lives of those around me. But although I can fight and kick and scream for change, I'm no politician. I don't have the power they do. And although the punk rocker inside me still dislikes "the establishment", I at least feel better knowing that at least one of them has taken a step forward to provide help for the children who need it the most.
Go Moonbeam!
Friday, October 7, 2011
Moving... from one battle to another
Well with the big move almost complete (the younger daughter and I are in Seattle now, while the wife and older daughter are still in San Francisco for another week or so), I finally have Internet access and am back. Before the move I decided that I would only bring the younger daughter up with me for several reasons. One being the thought that the older daughter would be more helpful with packing things up and getting the old place ready to hand back over to the owners (we felt the younger one would just hinder that process). Another being that she would be able to remain in the day treatment center for that much longer before transferring up here where we have no idea where she'll end up. Another big reason is one-on-one time. The younger one needs more alone time with me, and the older one needs more alone time with the wife. Both of them work really hard to divide the family into two teams (younger and mom vs older and dad) so we figured this would take them out of their element and force them to rely on the parent they are always fighting against.
And it seems to be working - without the other sibling around, both girls have been fairly cooperative and RRFTBA (Responsible, Respectful and Fun To Be Around) which is really all we ask of them.
Of course, this isn't to say things have gone smoothly. The week prior to the youngest and I heading up to Seattle, things ramped up quite a bit. The oldest began acting out, which we expected, but we weren't quite prepared for the intensity of it. A week before the initial move I received a call from her case manager who told me she was becoming violent at school. Of course, usually when she acted out at school we had "quiet time" at home - she rarely acted out in both places. Not so this time. What they were seeing at school was exactly what we were seeing at home. It got bad enough that the day before we left, we ended up calling the police (as instructed by her case manager) due to a physical altercation between the two girls. Who started it I don't know, but it quickly escalated to the point where the younger one had bruises on her neck from being karate chopped several times (and the older one doesn't even know karate!).
It was pretty apparent that the older daughter was acting out because she didn't want to stay behind and she figured if she could make mom upset enough, she would just HAVE to come with me. And boy did she try to make that happen! But we didn't give in, and although she continued to act out for several days after we left, she eventually eased up and mellowed out. Last I heard, she was actually being helpful with packing things up! Of course, I kept trying to tell her that the more she helped out, the easier it would be and the sooner we could get them up here, but reasoning and future planning isn't exactly a strong point with most RADs.
Are things easy? Oh hell no... but they are getting better. I still have my concerns about where she'll end up here - the local High School that she would normally attend is 1100 people. Far too large for her - she'll get lost in the crowd. Her IEP states that she needs to attend a "non-public day treatment center", but I suspect the school is going to try and get around that. So I know I have a huge fight ahead of me. Granted, this particular HS allegedly has the best Special Ed program of all the HSs in the district (we really did luck out with the schools here - all the Junior and Senior High Schools around here are 5 star) but she doesn't want to be in Special Ed. She wants to be in mainstream classes, which have been proven NOT to work for her.
So although the work to get her into the right program for her is just beginning, at least the " battle for supremacy" at home has faded and I no longer have to stress on that - I can now use all my spare energy fighting the schools again. And hopefully get something in place before she comes up here and again pushes her boundaries trying to see what she can get away with in a new place....
And it seems to be working - without the other sibling around, both girls have been fairly cooperative and RRFTBA (Responsible, Respectful and Fun To Be Around) which is really all we ask of them.
Of course, this isn't to say things have gone smoothly. The week prior to the youngest and I heading up to Seattle, things ramped up quite a bit. The oldest began acting out, which we expected, but we weren't quite prepared for the intensity of it. A week before the initial move I received a call from her case manager who told me she was becoming violent at school. Of course, usually when she acted out at school we had "quiet time" at home - she rarely acted out in both places. Not so this time. What they were seeing at school was exactly what we were seeing at home. It got bad enough that the day before we left, we ended up calling the police (as instructed by her case manager) due to a physical altercation between the two girls. Who started it I don't know, but it quickly escalated to the point where the younger one had bruises on her neck from being karate chopped several times (and the older one doesn't even know karate!).
It was pretty apparent that the older daughter was acting out because she didn't want to stay behind and she figured if she could make mom upset enough, she would just HAVE to come with me. And boy did she try to make that happen! But we didn't give in, and although she continued to act out for several days after we left, she eventually eased up and mellowed out. Last I heard, she was actually being helpful with packing things up! Of course, I kept trying to tell her that the more she helped out, the easier it would be and the sooner we could get them up here, but reasoning and future planning isn't exactly a strong point with most RADs.
Are things easy? Oh hell no... but they are getting better. I still have my concerns about where she'll end up here - the local High School that she would normally attend is 1100 people. Far too large for her - she'll get lost in the crowd. Her IEP states that she needs to attend a "non-public day treatment center", but I suspect the school is going to try and get around that. So I know I have a huge fight ahead of me. Granted, this particular HS allegedly has the best Special Ed program of all the HSs in the district (we really did luck out with the schools here - all the Junior and Senior High Schools around here are 5 star) but she doesn't want to be in Special Ed. She wants to be in mainstream classes, which have been proven NOT to work for her.
So although the work to get her into the right program for her is just beginning, at least the " battle for supremacy" at home has faded and I no longer have to stress on that - I can now use all my spare energy fighting the schools again. And hopefully get something in place before she comes up here and again pushes her boundaries trying to see what she can get away with in a new place....
Wednesday, September 21, 2011
Mixing RAD and Diabetes for fun and... well... not fun
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*
Monday, September 19, 2011
When a simple request turns into a nightmare...
Lately there have been some
definite improvements in my daughters behavior.
Certainly she’s still up to some of the same old tricks, but the massive
blowups and WWIII style drama explosions are further apart.
So imagine my surprise when a
simple request to “please feed the cats” would cause such a ruckus!! We were in the kitchen, I was finishing up
the days dishes, wife was preparing dinner, and my daughter started to unload the dish
drainer. The cats hadn’t eaten so I
asked her to do that instead.
From there it was all downhill.
For some reason that really
seemed to dysregulate her and I could practically feel her frustration. Then I watched her fill up 2 bowls (we have
three cats) to overflowing and put the cat food away. When I pointed out that was too much food,
especially for our overweight pig.. err I mean cat, as well as for the older
cat who tends to overeat and then vomit, I could practically feel her ready to
explode. So she returned almost all the
food to the container, leaving about 7 pieces in each of 2 bowls. When I said something along the lines of
“come on, really? They need more than that” it was ON. So she ended up in her room for the evening
and wouldn’t talk to me when I went back to show her that although I didn’t
approve of her behavior, I still loved her. She hasn’t had a blow up like that
in MONTHS and I really couldn’t figure out wtf was up. It was like she went from 0 to 100 in 20
seconds and I was at a loss… where did this come from? It’s not like we asked her to paint the
bathroom with her toothbrush, or cut off all her hair, or some other odd
request. Just asked her to feed the cats
– something we all do.
Then, a day or two later we
figured it out. When she returned from
grandmas the Sunday prior, she lost her anti-depressants. Why she didn’t tell us, I have no idea. But when we would ask if she took them, she
would tell us yes – but obviously she hadn’t.
Turns out they had fallen out of her backpack in the trunk of the car
and gotten into another bag with some camping stuff (we had just returned
ourselves and hadn’t gotten around to completely emptying the trunk). Thankfully we finally found them. But I really don’t understand why she was
telling us she was taking them when she wasn’t.
Or why she didn’t tell us she couldn’t find them? Would have been a simple matter to look for
them or even just refill the prescription.
I knew there was something
different about her all that week. I
thought it was just the beginning of school, but it was definitely
noticeable. She, of course, says she’s
no different on or off of them, but I’m not the only person who noticed. When I spoke with her case manager this
morning and mentioned it to her, she had an “a-ha!” moment – apparently my daughter had
been VERY volatile all week and they were trying to figure it out also. Like me, they had attributed it to it being
the first week of school but thought there must have been something else going
on.
I’ve been sitting here trying to
figure out her thought process and why she just let it go. But I can’t.
And she’s not telling…..
Wednesday, September 14, 2011
How her RAD came to be....
Reactive Attachment Disorder typically affects adopted children or those who live in the foster system for any length of time. And once you understand what causes the issue, it's not hard to see why. Less obvious is why children who live with their biological parents develop the disorder. Especially to parents who cared for their children and can't imagine a mother (or father) being any other way. After all, who could not love and care for their own child? Especially to the point where it causes lifelong problems? I know I have often felt awkward or misunderstood when I talk to people about my daughters issues. After all, with the exception of the first 6 months or so when I was in the US Navy and stationed on the other coast, and another 3 months while we were separated and going through the divorce and custody proceedings, I was there with her. Granted, I worked all day so I wasn't there the way her mother (who didn't work) was, but when I got home I would do what most parents do - I would bathe her, feed her, play with her, put her down at night, etc. So how bad did it have to be for this problem to develop?
Well... oddly enough, when packing up for the move my daughter and I stumbled across my saved divorce paperwork. well ok, I found it and she noticed it when I picked up the folder wrong and it all went sliding out onto the floor. And of course, the worst of it was right on top. Which she read. This was the brief that I had filed with the court requesting immediate custody be granted out of concern for my daughters physical well being. Because it was filed with the court, it's all a matter of public record so it's not like I'm divulging any secrets here. But if you were to meet my daughter today, you would never know some of the things she endured. You might never guess that she had been through so much as such a young age. But it did, and she did, and I'm only putting this up here to show that you never, ever know what you don't know, and this paints a pretty good picture of how her attachment disorder came to be.
Names have been redacted since they aren't really relevant, but if you really HAVE to know it is, like I said, a matter of public record and you can go look it up :) A. is my daughter, and S. is her older, half-sister who was about 8 at the time. Also, I'm taking it directly from the brief since that is more accurate than my memory (some of these I had forgotten about even)...
A. During my visits to the apartment since the date of separation, I have found dirty dishes stacked up, garbage cans which had spilled over onto the floor, food and drink left on the kitchen floor, and sharp objects left with the baby's reach. On several occasions I have seen A. taking food from the garbage can and putting it in her mouth. There was no apparent supervision.
B. On several occasions during my visits, I have found the front door unlocked and the children unsupervised. Several times, Respondent was asleep in the rear bedroom with the door closed, and on April 19, 1997 Respondent was unaware that S. had left to go somewhere with the neighbors, and insisted S. was in the front room. During recent conversations with S., she has indicated she has assumed increasing responsibility for her baby sister's care, in that she has been allowed to bath the baby unsupervised and is allowed to play outside with A., again without supervision. During a conversation on April 21, 1997, S. pointed out new scrapes on her elbows from a roller-blading mishap. When I asked why she hadn't tried to break her fall, she replied "Because I didn't want to drop A.". As the apartment is on a long road which parallels Highway 80, it is common for cars to speed past on a regular basis, creating a potentially hazardous situation.
C. On or about April 3, 1997, Respondent was served with a 30 day notice to vacate the apartment in which she and the minor children reside. To date, there has been no indication she has made any efforts to obtain replacement housing. during a discussion on April 30, 1997 with S.T., Owner and Landlord of the apartment building, he advised me he has made several attempts to collect the rent but Respondent filed to open the door or make any attempt whatsoever to resolve the situation.
D. On April 6, 1997 Petitioner took A. to Childrens Hospital Oakland Urgent Care Clinic for treatment of Chicken Pox. She had been suffering from a full outbreak for three days prior to that time, during which Respondent made no effort to obtain medical treatment.
E. A. suffered severe nerve damage in her left arm at birth, resulting in initial inability to use her arm. She has slowly been gaining limited use of the arm; however, continued improvement is dependent on continued physical therapy. She had been receiving physical therapy through California Childrens Services but was dropped from the program due to Respondents's failure to keep scheduled appointments.
F. On April 26, 1997, Respondent, upon learning that my health care coverage had been extended to cover A., demanded said coverage be cancelled in order to receive additional treatment through CCS at no cost. Respondent insisted A. had been re-enrolled in the physical therapy program due to a lack of insurance and had already resumed treatment. however, during a phone conversation on may 1, 1997 with Cynthia at California Childrens Services, I was informed that although A. could be considered for reinstatement to the program upon re-referral from her physician, there had been no such request, nor was there any record of contact with Respondent during the past 6 months.
Interestingly, there has been no repercussion from my daughter having seen and read this brief. I would have thought for sure that it would have triggered something.. anything... but it didn't. I think if we had come across this even 6 months ago, her reaction would have been very different and we would have had fall-out for days. Between that and the improvements in both her behavior and attitude, I know we're on the right track. She has been through so much - much more than many people - and every time I think about it, it breaks my heart. But it's going to be ok. SHE is going to be ok. I know it.
Love alone can't make up for the experiences she's had. But with our love, commitment, and lots and lots of work, there is hope for a better future.
Names have been redacted since they aren't really relevant, but if you really HAVE to know it is, like I said, a matter of public record and you can go look it up :) A. is my daughter, and S. is her older, half-sister who was about 8 at the time. Also, I'm taking it directly from the brief since that is more accurate than my memory (some of these I had forgotten about even)...
A. During my visits to the apartment since the date of separation, I have found dirty dishes stacked up, garbage cans which had spilled over onto the floor, food and drink left on the kitchen floor, and sharp objects left with the baby's reach. On several occasions I have seen A. taking food from the garbage can and putting it in her mouth. There was no apparent supervision.
B. On several occasions during my visits, I have found the front door unlocked and the children unsupervised. Several times, Respondent was asleep in the rear bedroom with the door closed, and on April 19, 1997 Respondent was unaware that S. had left to go somewhere with the neighbors, and insisted S. was in the front room. During recent conversations with S., she has indicated she has assumed increasing responsibility for her baby sister's care, in that she has been allowed to bath the baby unsupervised and is allowed to play outside with A., again without supervision. During a conversation on April 21, 1997, S. pointed out new scrapes on her elbows from a roller-blading mishap. When I asked why she hadn't tried to break her fall, she replied "Because I didn't want to drop A.". As the apartment is on a long road which parallels Highway 80, it is common for cars to speed past on a regular basis, creating a potentially hazardous situation.
C. On or about April 3, 1997, Respondent was served with a 30 day notice to vacate the apartment in which she and the minor children reside. To date, there has been no indication she has made any efforts to obtain replacement housing. during a discussion on April 30, 1997 with S.T., Owner and Landlord of the apartment building, he advised me he has made several attempts to collect the rent but Respondent filed to open the door or make any attempt whatsoever to resolve the situation.
D. On April 6, 1997 Petitioner took A. to Childrens Hospital Oakland Urgent Care Clinic for treatment of Chicken Pox. She had been suffering from a full outbreak for three days prior to that time, during which Respondent made no effort to obtain medical treatment.
E. A. suffered severe nerve damage in her left arm at birth, resulting in initial inability to use her arm. She has slowly been gaining limited use of the arm; however, continued improvement is dependent on continued physical therapy. She had been receiving physical therapy through California Childrens Services but was dropped from the program due to Respondents's failure to keep scheduled appointments.
F. On April 26, 1997, Respondent, upon learning that my health care coverage had been extended to cover A., demanded said coverage be cancelled in order to receive additional treatment through CCS at no cost. Respondent insisted A. had been re-enrolled in the physical therapy program due to a lack of insurance and had already resumed treatment. however, during a phone conversation on may 1, 1997 with Cynthia at California Childrens Services, I was informed that although A. could be considered for reinstatement to the program upon re-referral from her physician, there had been no such request, nor was there any record of contact with Respondent during the past 6 months.
Interestingly, there has been no repercussion from my daughter having seen and read this brief. I would have thought for sure that it would have triggered something.. anything... but it didn't. I think if we had come across this even 6 months ago, her reaction would have been very different and we would have had fall-out for days. Between that and the improvements in both her behavior and attitude, I know we're on the right track. She has been through so much - much more than many people - and every time I think about it, it breaks my heart. But it's going to be ok. SHE is going to be ok. I know it.
Love alone can't make up for the experiences she's had. But with our love, commitment, and lots and lots of work, there is hope for a better future.
Monday, September 12, 2011
Why you need an attachment therapist
There has been some discussion lately about the effectiveness of therapy for RAD, and the general consensus seems to be "not traditional therapy". Nor does typical "play therapy" seem to be of any use. In fact, traditional and play therapy tend to make things worse. One on one therapy means the child is alone with the therapist. This gives the child the room and freedom to manipulate and triangulate the therapist, and the more they get their hooks into the therapist, the more empowered they become. That isn't the only problem either. The child is quickly learning how people want/expect them to behave and act. They are learning better methods of getting what they want.
Look at the following traits:
Factor 1:
Glibness/superficial charm
Grandiose sense of self-worth
Pathological lying
Cunning/manipulative
Lack of remorse or guilt
Shallow affect (genuine emotion is short-lived and egocentric)
Callousness; lack of empathy
Failure to accept responsibility for own actions
Factor 2:
Need for stimulation/proneness to boredom
Parasitic lifestyle
Poor behavioral control
Lack of realistic long-term goals
Impulsivity
Irresponsibility
Juvenile delinquency
Early behavior problems
Revocation of conditional release
Look familiar? Certainly sounds like a list of RAD traits, but that's not where I got it from. The above comes from the Hare Psychopathy Checklist, which is the psycho-diagnostic tool most commonly used to assess psychopathy.
Because traditional therapy allows the RAD to perfect many of the above traits in factor 1, you are, in effect, training them to become a better sociopath. And I'm guessing that's not anywhere near the top of your list for "things I want for my child". Luckily, just as the attachment issues took time to develop, the child can relearn ways of dealing with the world in time. There is a reason the diagnosis of "sociopath" isn't given before a person reaches age 18 - the brain is still growing and learning throughout childhood, and just as the child can learn manipulative ways with traditional therapy, proper attachment therapy can help reverse that process.
This is why Attachment therapy focuses less on the child and more on the parent, especially working with the parent on finding ways to get the child to attach. If you are seeing an attachment therapist, they may rarely ever meet with your child, and certainly will never meet with them alone. Unfortunately, attachment therapists aren't easy to find - you can't just look in the phone book for a list of names!
So... where to find them? A great place to start is on Nancy Tomas' website where she has a list of attachment therapists by state. She only lists therapists that have been recommended by parents. If you have had success with any that are not on the list, please let her know.
If you currently DO have your child in traditional therapy, look back over the past year and ask yourself if he/she has improved or worsened. Only you can decide whether your childs therapist is right for them.
Look at the following traits:
Factor 1:
Glibness/superficial charm
Grandiose sense of self-worth
Pathological lying
Cunning/manipulative
Lack of remorse or guilt
Shallow affect (genuine emotion is short-lived and egocentric)
Callousness; lack of empathy
Failure to accept responsibility for own actions
Factor 2:
Need for stimulation/proneness to boredom
Parasitic lifestyle
Poor behavioral control
Lack of realistic long-term goals
Impulsivity
Irresponsibility
Juvenile delinquency
Early behavior problems
Revocation of conditional release
Look familiar? Certainly sounds like a list of RAD traits, but that's not where I got it from. The above comes from the Hare Psychopathy Checklist, which is the psycho-diagnostic tool most commonly used to assess psychopathy.
Because traditional therapy allows the RAD to perfect many of the above traits in factor 1, you are, in effect, training them to become a better sociopath. And I'm guessing that's not anywhere near the top of your list for "things I want for my child". Luckily, just as the attachment issues took time to develop, the child can relearn ways of dealing with the world in time. There is a reason the diagnosis of "sociopath" isn't given before a person reaches age 18 - the brain is still growing and learning throughout childhood, and just as the child can learn manipulative ways with traditional therapy, proper attachment therapy can help reverse that process.
This is why Attachment therapy focuses less on the child and more on the parent, especially working with the parent on finding ways to get the child to attach. If you are seeing an attachment therapist, they may rarely ever meet with your child, and certainly will never meet with them alone. Unfortunately, attachment therapists aren't easy to find - you can't just look in the phone book for a list of names!
So... where to find them? A great place to start is on Nancy Tomas' website where she has a list of attachment therapists by state. She only lists therapists that have been recommended by parents. If you have had success with any that are not on the list, please let her know.
If you currently DO have your child in traditional therapy, look back over the past year and ask yourself if he/she has improved or worsened. Only you can decide whether your childs therapist is right for them.
Friday, September 9, 2011
Attaching to your child
You may not know this, but I actually do enjoy getting emails from people - especially people who have children with issues similar to mine. It's not that I'm glad others have to deal with the problem, but it does provide a sense of solidarity and let's us know we aren't alone (and we don't have to navigate this by ourselves). However, I'm not a doctor, or a therapist, or anything more than a father just trying to make sense of all this as I go. That said, there are certain things I have found that work better than others. While I'm not perfect at these, I find the more I utilize these approaches, the stronger my daughter seems to be attaching - which is the ultimate goal, is it not?
For starters, I've learned that children with complex trauma backgrounds tend to be hypervigilant and easily triggered by any irritation, sarcasm, anger, impatience, or hostility that my creep into your tone of voice. Think back to the last few times you were frustrated or upset with your child - if you can honestly say you were able to avoid all of the above, you are a saint. Seriously. It's definitely something I am working on, but it isn't easy (go ahead, try it). However, any time your child senses any of the above, they can quickly become defensive and dysregulated. So rule #1 is to remain mindful of your tone. If possible, step away if you feel you are getting triggered yourself.
Since our children are wired to control and resist (yay us!), any direct commands tend to elicit a reaction to an authoritarian stance. If you think that is going to get you anywhere, well... So rule #2 is to try some skillful redirection by prefacing your request with:
1) A caring expression that the child matters to you.
i.e. "I care too much about you to let you run away. I hope you stay here with us where it is safe"
2) Staying emotionally attuned to the child's inner experiences.
i.e. "Your feelings are important to me and I can see you were really hurt by what Susie said. I can't let you go punch her and I don't want you hurt either. I want to understand and help you through this"
3) Focusing on the child's strengths or commenting about your child having been successful previously and you are asking them to do again what they did before.
i.e. "Last week you really worked hard at being respectful and considerate, and it really paid off for you. That seems difficult for you right now and I wonder if you could try as hard as you did last week"
Above all, avoid power struggles at all costs. Any time you are in a position where your child feels you are controlling them or telling them what to do, you risk triggering reactivity and power games. Remember, the child must always feel they are "in charge". Try giving your child permission to do the action while describing the consequences. This is called a "No Problem Attitude". An example of this is something like "We care too much about you to let you get hurt, because you are important to us. If you decide to cut school, you could do that and we would have to call the police to make sure you don't get hurt. But you can do that if you choose". At this point, walk away to give your child space and time to think over her choice. Oftentimes, this will lead to a good choice (assuming they have decent cause and effect skills).
In short, if you find your child is dysregulated, tantruming, or in a PTSD triggered state...
Talk calmly and slowly, using a few short words
Avoid long discussions or lectures
Avoid becoming triggered into your own anger - this just adds fuel to the fire
Side-step power struggles
Calmly describe the choice
Calmly walk away to give compliance time
Do NOT administer any consequences while your child is dysregulated. This will only increase a sense of deprivation and fuel dysregulation
BUT, DO give consequences later on once your child is regulated. Be sure to remind them that you want them to try again next time because you want them to get the rewards and privileges they want.
If you can catch your child when they are just beginning to move into a dysregulated state, you can try to head it off using the PACE method. These are simple attempts at establishing a connection:
P - Playfulness
A - Acceptance (i.e. "I'm sorry it is so hard. Sometimes I don't like rules either")
C - Curiosity ("I wonder what is going on today? Yesterday it was easy for you to help out, yet today seems harder?")
E - Empathy
Lastly, whenever possible apply the 4:1 Rule of Positive Comments to Consequences (pretty self explanatory)
Anyway, these guidelines have helped me establish better attachment with my daughter and I hope they can help you. I would be curious to hear how they work for you!
For starters, I've learned that children with complex trauma backgrounds tend to be hypervigilant and easily triggered by any irritation, sarcasm, anger, impatience, or hostility that my creep into your tone of voice. Think back to the last few times you were frustrated or upset with your child - if you can honestly say you were able to avoid all of the above, you are a saint. Seriously. It's definitely something I am working on, but it isn't easy (go ahead, try it). However, any time your child senses any of the above, they can quickly become defensive and dysregulated. So rule #1 is to remain mindful of your tone. If possible, step away if you feel you are getting triggered yourself.
Since our children are wired to control and resist (yay us!), any direct commands tend to elicit a reaction to an authoritarian stance. If you think that is going to get you anywhere, well... So rule #2 is to try some skillful redirection by prefacing your request with:
1) A caring expression that the child matters to you.
i.e. "I care too much about you to let you run away. I hope you stay here with us where it is safe"
2) Staying emotionally attuned to the child's inner experiences.
i.e. "Your feelings are important to me and I can see you were really hurt by what Susie said. I can't let you go punch her and I don't want you hurt either. I want to understand and help you through this"
3) Focusing on the child's strengths or commenting about your child having been successful previously and you are asking them to do again what they did before.
i.e. "Last week you really worked hard at being respectful and considerate, and it really paid off for you. That seems difficult for you right now and I wonder if you could try as hard as you did last week"
Above all, avoid power struggles at all costs. Any time you are in a position where your child feels you are controlling them or telling them what to do, you risk triggering reactivity and power games. Remember, the child must always feel they are "in charge". Try giving your child permission to do the action while describing the consequences. This is called a "No Problem Attitude". An example of this is something like "We care too much about you to let you get hurt, because you are important to us. If you decide to cut school, you could do that and we would have to call the police to make sure you don't get hurt. But you can do that if you choose". At this point, walk away to give your child space and time to think over her choice. Oftentimes, this will lead to a good choice (assuming they have decent cause and effect skills).
In short, if you find your child is dysregulated, tantruming, or in a PTSD triggered state...
Talk calmly and slowly, using a few short words
Avoid long discussions or lectures
Avoid becoming triggered into your own anger - this just adds fuel to the fire
Side-step power struggles
Calmly describe the choice
Calmly walk away to give compliance time
Do NOT administer any consequences while your child is dysregulated. This will only increase a sense of deprivation and fuel dysregulation
BUT, DO give consequences later on once your child is regulated. Be sure to remind them that you want them to try again next time because you want them to get the rewards and privileges they want.
If you can catch your child when they are just beginning to move into a dysregulated state, you can try to head it off using the PACE method. These are simple attempts at establishing a connection:
P - Playfulness
A - Acceptance (i.e. "I'm sorry it is so hard. Sometimes I don't like rules either")
C - Curiosity ("I wonder what is going on today? Yesterday it was easy for you to help out, yet today seems harder?")
E - Empathy
Lastly, whenever possible apply the 4:1 Rule of Positive Comments to Consequences (pretty self explanatory)
Anyway, these guidelines have helped me establish better attachment with my daughter and I hope they can help you. I would be curious to hear how they work for you!
Wednesday, September 7, 2011
A source of stress.....
The other day when we were heading downtown to pick up my daughter after her visit with grandma, I found myself really stressing over her being down there alone. She’s almost 16 and when I look back on when I was 16 I was so very different. I was going everywhere by myself and rarely home. I had a job, money, and lots of places to hang out. So why was I so stressing over her walking 2 blocks from the train to the library?
Oh yeah, her poor decision making skills and lack of cause and effect thinking. My wife and I have joked about how my daughter would sell us out for a bar of chocolate (ok, we were only half joking) but it’s really an indicator of how she thinks. She lives in the moment, rarely considering how things will affect her even 10 minutes later. Combine that with her need for attention and we have a potentially disastrous situation when she’s out walking around. There have been more than one occasion where guys have hit on her while she was out, and no matter how many times we tell her she needs to get away from them rather than respond, she can’t help but engage in conversation with them. And it’s not just conversation either – there have been a couple of times where they have managed to get close enough to actually touch her.
As a father, that’s both scary and infuriating.
Who are these men and why are they touching my daughter?
But although she says she wishes they would leave her alone, she won’t do anything really to stop it. We tell her to ignore them, duck into the closest store and tell the person working there that she is being bothered by some guy. But what she does instead is engage them in conversation (even if it’s just one word answers, that’s enough for some guys to think it’s all good) and continue walking down the street as if nothing is wrong.
So yeah, I was really worried and stressed about her wandering around in downtown San Francisco even though it was in such a public place. I don’t even like being down there by myself in certain areas, and I’m not a little guy, so the thought of her weaving her way between homeless drunks and drug addicts that have made their way down from the tenderloin really freaked me out.
I wish there was some way to get her to understand the dangers. She’s tall, she’s thin, she’s beautiful, and she is incredibly naive. Even her case manager fears for her safety and well being due to her naivety around social issues such as boys. She calls her an “unwanted pregnancy waiting to happen”. Not exactly what I want to hear – especially having been a teenage boy myself. Yet, no matter how many times we try to impress on her the dangers out there, she seems to remain oblivious. The ‘instant attention’ is far too alluring and outweighs any ‘possible problems’ that might arise from it.
And people wonder why we keep such close tabs on her…. “back off a bit and she’ll blossom”… yeah, right. People have no idea….
Oh yeah, her poor decision making skills and lack of cause and effect thinking. My wife and I have joked about how my daughter would sell us out for a bar of chocolate (ok, we were only half joking) but it’s really an indicator of how she thinks. She lives in the moment, rarely considering how things will affect her even 10 minutes later. Combine that with her need for attention and we have a potentially disastrous situation when she’s out walking around. There have been more than one occasion where guys have hit on her while she was out, and no matter how many times we tell her she needs to get away from them rather than respond, she can’t help but engage in conversation with them. And it’s not just conversation either – there have been a couple of times where they have managed to get close enough to actually touch her.
As a father, that’s both scary and infuriating.
Who are these men and why are they touching my daughter?
But although she says she wishes they would leave her alone, she won’t do anything really to stop it. We tell her to ignore them, duck into the closest store and tell the person working there that she is being bothered by some guy. But what she does instead is engage them in conversation (even if it’s just one word answers, that’s enough for some guys to think it’s all good) and continue walking down the street as if nothing is wrong.
So yeah, I was really worried and stressed about her wandering around in downtown San Francisco even though it was in such a public place. I don’t even like being down there by myself in certain areas, and I’m not a little guy, so the thought of her weaving her way between homeless drunks and drug addicts that have made their way down from the tenderloin really freaked me out.
I wish there was some way to get her to understand the dangers. She’s tall, she’s thin, she’s beautiful, and she is incredibly naive. Even her case manager fears for her safety and well being due to her naivety around social issues such as boys. She calls her an “unwanted pregnancy waiting to happen”. Not exactly what I want to hear – especially having been a teenage boy myself. Yet, no matter how many times we try to impress on her the dangers out there, she seems to remain oblivious. The ‘instant attention’ is far too alluring and outweighs any ‘possible problems’ that might arise from it.
And people wonder why we keep such close tabs on her…. “back off a bit and she’ll blossom”… yeah, right. People have no idea….
Monday, September 5, 2011
A breakthrough... small, but huge!
My daughters don't do well with change. Not at all. So this upcoming move 2 states away seems to be really stressing them out. They have both been acting out in ways we haven't seen in quite a while. But there have been incredible breakthroughs as well. Last week my oldest was in group at the treatment center when she volunteered she starts trouble with her step mother because she's there. She admitted (all on her own, with no coaxing by staff) that she's really pissed at her bio-mom (and I think 'pissed' is too soft a word for how she really feels, but it's the one she used) but since bio-mom isn't around, she takes it out on step-mom because she is the only mother figure that is available.
While this isn't news to us (we've been telling people this for many years), for her to have expressed it is HUGE! It tells us that whatever we've been doing is working. That the way she has been looking at things is different. I mean, we've noticed it - her behavior has improved in general, her attitude has improved in general (we still have huge outbursts of drama, but it's not constant like it used to be) - but we've never actually heard her express her anger for her bio-mom.
We've always known it was there though. All you had to do was mention her bio-moms name and the tears would start. So perhaps this breakthrough will propel her on towards more healing? Sometimes it seems to be just the opposite though - each breakthrough brings with it yet more intense drama. But that's understandable, and we can work though all of that as long as we know we're heading in the right direction. I don't think she's quite ready to sit down and write her bio-mom a letter yet, but I think someday she's going to have to do that. Even if she never mails it (and we wouldn't know where to send it anyway), she needs to get all of that crap out of her. Much like you need to clean your cars oil pan to get all the gunk out so it runs smoother.
This treatment center and it's staff have been such a Godsend for us - I pray they have something similar in the Seattle area....
While this isn't news to us (we've been telling people this for many years), for her to have expressed it is HUGE! It tells us that whatever we've been doing is working. That the way she has been looking at things is different. I mean, we've noticed it - her behavior has improved in general, her attitude has improved in general (we still have huge outbursts of drama, but it's not constant like it used to be) - but we've never actually heard her express her anger for her bio-mom.
We've always known it was there though. All you had to do was mention her bio-moms name and the tears would start. So perhaps this breakthrough will propel her on towards more healing? Sometimes it seems to be just the opposite though - each breakthrough brings with it yet more intense drama. But that's understandable, and we can work though all of that as long as we know we're heading in the right direction. I don't think she's quite ready to sit down and write her bio-mom a letter yet, but I think someday she's going to have to do that. Even if she never mails it (and we wouldn't know where to send it anyway), she needs to get all of that crap out of her. Much like you need to clean your cars oil pan to get all the gunk out so it runs smoother.
This treatment center and it's staff have been such a Godsend for us - I pray they have something similar in the Seattle area....
Friday, September 2, 2011
Saddest. Day. Ever.
Sometimes we really have no idea what is going on inside somebody elses head. Even if we think we do, and we try really hard to, if you haven’t lived it you just can’t fathom it. For example, if you have never experienced an episode of major depression, you don’t realize just how debilitating it can be. It’s not something you can just smile your way out of. I was reminded of this just recently.
I was watching a movie called Wake Wood. Without giving it away, it’s about a couple who loses their daughter in a tragic accident and moves to WakeWood where there is a Pagan priest who offers to bring their daughter back to life for 3 days. At a price of course, but that isn’t the point. I hate movies like this. They always make me think of how I would feel if I lost my daughter(s).
So it was time for my daughter to check her blood sugar levels for the final time of the night and I mentioned this to her – that I was watching this horrible movie about a mom and dad that lost their daughter and how horrible I would feel if I lost her. How much I would miss her and just couldn’t imagine how terrible it would be. She quickly began making a joke of it, saying things like “oh you know you’d be happy, you’d probably have a party”. I was shocked. I told her that I was serious, that I wouldn’t miss anybody more than her but she kept on with her “you’d be really happy” dialogue.
After a couple of minutes I asked her if she was joking… I mean, she couldn’t possibly feel that way right? Her answer was “sort of”. I knew that wasn’t a lie. I know when she’s lying about her feelings and she was dead serious. Deep down inside of her, there is a part of her that truly believes nobody would miss her, nobody would be upset if she were to die.
How heartbreaking is that? To hear something like that come from your own flesh and blood. It bothered me all night long and I slept horribly. I haven’t always been the most attentive parent (untreated major depression will do that), but I’ve always been there for her, have always done things I felt were best for her, and have always thought we had this bond.. a bond I have with no others (I have a bond with my other daughter too – just as strong, but different). So for her to feel this way just blew me away. That’s how deeply she was affected by the trauma she suffered as a baby. It was a brief glimpse into the dark inner workings deep in her mind, and I felt powerless. And sad.
I had a long discussion with her caseworker at the day treatment center, and she says this isn’t uncommon among children who have gone through what she has. That all we can do is keep showing her that she’s worthy of our love and care, that we’re there for her, that she doesn’t have to be alone. But ultimately it has to come from within her.
As we ramp up to possibly move out of state, her behavior is similarly ramping up. However, along with that have been several major breakthroughs – this being one of them. Certainly there’s some good to be had from this. It’s information we can use to help her continue to heal. But in the meantime, wow….
Just. Wow.
I was watching a movie called Wake Wood. Without giving it away, it’s about a couple who loses their daughter in a tragic accident and moves to WakeWood where there is a Pagan priest who offers to bring their daughter back to life for 3 days. At a price of course, but that isn’t the point. I hate movies like this. They always make me think of how I would feel if I lost my daughter(s).
So it was time for my daughter to check her blood sugar levels for the final time of the night and I mentioned this to her – that I was watching this horrible movie about a mom and dad that lost their daughter and how horrible I would feel if I lost her. How much I would miss her and just couldn’t imagine how terrible it would be. She quickly began making a joke of it, saying things like “oh you know you’d be happy, you’d probably have a party”. I was shocked. I told her that I was serious, that I wouldn’t miss anybody more than her but she kept on with her “you’d be really happy” dialogue.
After a couple of minutes I asked her if she was joking… I mean, she couldn’t possibly feel that way right? Her answer was “sort of”. I knew that wasn’t a lie. I know when she’s lying about her feelings and she was dead serious. Deep down inside of her, there is a part of her that truly believes nobody would miss her, nobody would be upset if she were to die.
How heartbreaking is that? To hear something like that come from your own flesh and blood. It bothered me all night long and I slept horribly. I haven’t always been the most attentive parent (untreated major depression will do that), but I’ve always been there for her, have always done things I felt were best for her, and have always thought we had this bond.. a bond I have with no others (I have a bond with my other daughter too – just as strong, but different). So for her to feel this way just blew me away. That’s how deeply she was affected by the trauma she suffered as a baby. It was a brief glimpse into the dark inner workings deep in her mind, and I felt powerless. And sad.
I had a long discussion with her caseworker at the day treatment center, and she says this isn’t uncommon among children who have gone through what she has. That all we can do is keep showing her that she’s worthy of our love and care, that we’re there for her, that she doesn’t have to be alone. But ultimately it has to come from within her.
As we ramp up to possibly move out of state, her behavior is similarly ramping up. However, along with that have been several major breakthroughs – this being one of them. Certainly there’s some good to be had from this. It’s information we can use to help her continue to heal. But in the meantime, wow….
Just. Wow.
Wednesday, August 31, 2011
Pregnant? Relax - it's good for you and your baby....
Although RAD can frequently be tied to early childhood trauma, there are other things that can cause behavioral problems in children, including RAD-like traits. One of the biggies is stress during pregnancy. When my RAD was being diagnosed, that was one of the things they asked about – how much stress was her bio-mom under while pregnant.
My answer? “A lot”. We didn’t know she was pregnant when we moved from California to Virginia. Starting fresh in a new place where we didn’t really know anybody is stressful enough, but about 3 months in (after we found out she was pregnant), we also learned that HER mothers breast cancer had recurred and spread throughout her body. Over the next 9 months bio-mom made 3 trips back and forth to California to be with her mother. The stress of being pregnant and having her mother dying of cancer was pretty intense and led to orders of bed rest for the last 4 months of the pregnancy. Of course, it’s not like she listened very well considering her mother was bed-ridden herself, and she had an older daughter that she needed to take care of as well. One can only wonder how much affect that had on RAD.
There is also the question of whether RAD was exposed to meth in-utero during those visits. I suspect she was, which would certainly not help matters any. Drug/Alcohol use during pregnancy is another leading cause of future behavioral problems. But I'll touch on that some other day.
This isn’t to say, of course, that just because you’re pregnant and stressed your child is doomed to behavior problems. Researchers have found that two or fewer stressors are not associated with behavioral development, but as you increase that number, you also increase the likelihood of future problems. And they aren’t talking stressors such as what gift to buy your niece for her birthday, or sitting in traffic trying to get to your doctors appointment on time, they are referring to major stressors such as financial and relationship difficulties, a complex pregnancy, job loss and issues with other children. Major life stressors could also include a death in the family or other catastrophic events.
So what can you do? It’s not like you can just put off those major stressors when they come your way. Telling Uncle Bob to please not die until after you have the baby isn’t exactly going to help any either. Instead, if you find yourself feeling stressed while pregnant, try to find ways to minimize that stress. You can:
Try deep-breathing exercises, yoga or stretching.
Get regular exercise such as swimming or walking.
Eat healthy – this isn’t good just for you but your baby as well!
Go to bed early. Think about how hard your body is working to nourish your baby – take care of it and give it the rest it needs.
Put off chores if you can. Take a nap or read a book instead.
If you have sick days or vacation time, take a day or two here and there just to rest and relax.
If you find yourself facing a particularly stressful situation, find a support group if you can. Sharing your burden with others in the same situation can reduce the stress, and the benefit of getting support from others in your situation can be invaluable.
At your breaking point? Find a therapist who can help you minimize your stress and work through it. There’s no shame in asking for help.
Hopefully if you’re pregnant and reading this, it’s not stressing you out. Keep in mind that even if you have two or more stressors doesn’t mean that your child will automatically have issues. A survey by Australian researchers found that more than 37% of women experience two or more stressors during their pregnancy, and a majority of those children turn out just fine.
So go have a cup of tea, put your feet up, and tell hubby it’s his turn to make dinner – your baby will probably never thank you for it, but you’ll know.
My answer? “A lot”. We didn’t know she was pregnant when we moved from California to Virginia. Starting fresh in a new place where we didn’t really know anybody is stressful enough, but about 3 months in (after we found out she was pregnant), we also learned that HER mothers breast cancer had recurred and spread throughout her body. Over the next 9 months bio-mom made 3 trips back and forth to California to be with her mother. The stress of being pregnant and having her mother dying of cancer was pretty intense and led to orders of bed rest for the last 4 months of the pregnancy. Of course, it’s not like she listened very well considering her mother was bed-ridden herself, and she had an older daughter that she needed to take care of as well. One can only wonder how much affect that had on RAD.
There is also the question of whether RAD was exposed to meth in-utero during those visits. I suspect she was, which would certainly not help matters any. Drug/Alcohol use during pregnancy is another leading cause of future behavioral problems. But I'll touch on that some other day.
This isn’t to say, of course, that just because you’re pregnant and stressed your child is doomed to behavior problems. Researchers have found that two or fewer stressors are not associated with behavioral development, but as you increase that number, you also increase the likelihood of future problems. And they aren’t talking stressors such as what gift to buy your niece for her birthday, or sitting in traffic trying to get to your doctors appointment on time, they are referring to major stressors such as financial and relationship difficulties, a complex pregnancy, job loss and issues with other children. Major life stressors could also include a death in the family or other catastrophic events.
So what can you do? It’s not like you can just put off those major stressors when they come your way. Telling Uncle Bob to please not die until after you have the baby isn’t exactly going to help any either. Instead, if you find yourself feeling stressed while pregnant, try to find ways to minimize that stress. You can:
Try deep-breathing exercises, yoga or stretching.
Get regular exercise such as swimming or walking.
Eat healthy – this isn’t good just for you but your baby as well!
Go to bed early. Think about how hard your body is working to nourish your baby – take care of it and give it the rest it needs.
Put off chores if you can. Take a nap or read a book instead.
If you have sick days or vacation time, take a day or two here and there just to rest and relax.
If you find yourself facing a particularly stressful situation, find a support group if you can. Sharing your burden with others in the same situation can reduce the stress, and the benefit of getting support from others in your situation can be invaluable.
At your breaking point? Find a therapist who can help you minimize your stress and work through it. There’s no shame in asking for help.
Hopefully if you’re pregnant and reading this, it’s not stressing you out. Keep in mind that even if you have two or more stressors doesn’t mean that your child will automatically have issues. A survey by Australian researchers found that more than 37% of women experience two or more stressors during their pregnancy, and a majority of those children turn out just fine.
So go have a cup of tea, put your feet up, and tell hubby it’s his turn to make dinner – your baby will probably never thank you for it, but you’ll know.
Monday, August 29, 2011
Budget cuts suck
Ugh.. Living in California definitely has its advantages. Temperate weather, beautiful scenery (at least in San Francisco), just wonderful all around in almost every way. Except for the cost of everything – things here are far too expensive. Apparently, that includes the cost of helping children with mental and emotional issues. Beginning next year, AB3632 has been cut from the state budget. In a nutshell, California Assembly Bill (AB) 3632, passed in 1984, ushered in an era of entitlement to mental health services for schoolchildren with serious emotional disturbances.
It is precisely because of AB3632 that my daughter has been able to attend her current day treatment center, as well as her summer camp, at no cost to us. This center has really turned things around for her, and she continues to make breakthroughs the more they work with her. For the center to lose this funding means many children who need the help will be thrown back into mainstream schools where they will get lost, slip between the cracks, and fail to get the help that they need. Yet another short term fix with no thought for the long term consequences for our children.
I can’t begin to tell you what a lifesaver this center and others like it are, not only for our children but for us parents as well. It’s definitely nice knowing your child isn’t lost in a larger school where they aren’t emotionally and/or mentally able to handle it. Certainly takes a lot of the stress out of the every day!
It’s my understanding that they are going to fight to keep the center open, perhaps staffing it with volunteers and interns, but it won’t be the same. Without seasoned staff to handle the RADs, it’s certainly not going to be easy for them.
Perhaps things will change before then? Who knows…
It is precisely because of AB3632 that my daughter has been able to attend her current day treatment center, as well as her summer camp, at no cost to us. This center has really turned things around for her, and she continues to make breakthroughs the more they work with her. For the center to lose this funding means many children who need the help will be thrown back into mainstream schools where they will get lost, slip between the cracks, and fail to get the help that they need. Yet another short term fix with no thought for the long term consequences for our children.
I can’t begin to tell you what a lifesaver this center and others like it are, not only for our children but for us parents as well. It’s definitely nice knowing your child isn’t lost in a larger school where they aren’t emotionally and/or mentally able to handle it. Certainly takes a lot of the stress out of the every day!
It’s my understanding that they are going to fight to keep the center open, perhaps staffing it with volunteers and interns, but it won’t be the same. Without seasoned staff to handle the RADs, it’s certainly not going to be easy for them.
Perhaps things will change before then? Who knows…
Friday, August 26, 2011
Tossing your childs room
One of the (not so) fun things about raising a RAD is trying to stay one step ahead of them at all times. Actually, you need to be two steps ahead if you hope to keep any semblance of sanity. Since RADs can be ever so sneaky, they are masters at hiding things they don’t want you to find. Of course, this applies to any teenager, not just RADs! One of the things we’ve had to do on a regular basis is go through our RADs room looking for contraband. Think about all the wonderful hiding places there are! So, in order to be helpful I have put together a list (with the help of other RAD parents over at the Attachment Support Forum ) of hiding places that our RADs have used. Some of these weren’t surprising to me. Others? I never would have thought about them! Some of these parents put prison guards to shame..
So without further ado, here is a list of places to check when tossing your childs room:
Bed frames, any hollow part of a head or foot board
Look for slits in the seams of a mattress or box springs,
between the mattress & box springs
also look for the lining of the box springs to have been loosened to
provide a hiding place
In boxes or storage bins under the bed
Check the "legs" of plastic storage modules or cubes
Look in shoes, especially the toes, and again, especially if under the bed
Look in dirty socks left around, or if stuffed in shoes
Check pockets of clothing in hanging in the closet
Check to make sure a baggie isn't hung on the hanger with a clothing item hung over it
Check to make sure moldings haven't been loosened and contraband hidden
behind them
Check drawer bottoms by removing the drawer completely and ensuring
nothing is taped to the bottom
also check the inside of the dresser unit with the drawers removed, as
well as under the dresser and behind any mirror
check lamps. Some have a paper or felt bottom that easily comes off and
is not noticed as the lamp sits on it. Inside of some lamps this area is hollow.
check to make sure screws are tight on switch boxes, outlet boxes and
lighting fixtures as they make a good hiding place
Check to make sure smoke alarms in bedrooms have the battery in place, and not something else.
Check inside electronic devices, especially those that can run ac/dc and are plugged in. The storage compartment for the batteries or alternately, the cord, are great stashes. Also check to make sure the device isn't "cracked" open. Inside them is a great stash
Look for "Strings" coming out of openings. Pull on the strings to see
what is attached
Check inside chapstick containers or Altoid and TicTac containers.
Make sure TicTacs ARE Tictacs
Check M&M, Skittles and PEZ or other candy containers to ensure that they in fact hold candy and not pills.
Check makeup and especially lipstick containers. Empty ones are often
used as stashes
Check bottles of cologne or lotion to ensure they don't have booze in
them, if you find an empty shampoo bottle in the bedroom, or mouthwash
bottle, sniff for booze rather than shampoo or mouthwash
Check trash containers for "lumpy" wads of foil or tissue that can contain pills, powder or gummy tarry substance
Check inside the clothes hanger rod if it's hollow
Also check the inside of closet ceilings for taped envelopes etc
Check that books are actually books, and not been razored out of the
middle of the pages to create a stash
Also check behind rows of books in the book case.
check that tampon carriers actually have tampons in them, also check
feminine "supply" boxes to ensure they have only supplies in them
If you find Eye drops, nose spray, or Hemmoroid ointment or suppositories,
suspect "sniffing" or "huffing"
If your child has "Whiteout" or "Canned Air" or any kind of spray can in their room, especially if they go through it quickly suspect huffing.
Check "tool" kits and makeup bags as well as art supply and craft kits to ensure they're what they appear
If you find blackened spoons, or blackened aluminum foil, look closer for evidence of other uses.
Make sure that Pens have ink cartridges in them and not a joint or pills or a "rock"
cdplayers....pills can sit quite nicely on a loaded (pun?) cd disc......
Make sure that all meds in the house are kept in a locked box or cabinet and that only the parents actually have the keys. Many times, kids get their drugs from the bathroom medicine cabinet
In bathrooms, check all liquid containers to ensure they contain the
labled liquid. Any clear booze such as vodka with some scope or Listerine in it takes on the appearance of mouthwash
Also watch for nite time liquids or vanilla extract bottles due to their alcohol contents
Check the toilet tank and tank lid for stashes as well as under any seat cover as nobody thinks to look there
Money can lie flat taped under a toilet lid...only works for stolen money
Check the toilet paper tube. Most are two pieces with a spring
inside, leaving plenty of room for a stash
Towel rack tubes are another stash as many are hollow
Make sure and check heating and air vents and cold air returns. If the
grills are loose or screws are missing they might be used as a stash
Also, make sure that carpet is stretched and tacked down, if it's loose or has "cut" places, usually under a bed or piece of furniture, the pad can be removed and a stash can be under the carpet and in a cut out section of the padding
The arms/legs or even heads on baby dolls (and action figures) are often
removable - revealing a hollow body inside.
Also any stuffed animal toy that has moving parts. There is usually a
battery compartment. When the moving parts stopped working, child threw
those away and used the extra space inside the stuffed animal to stash
things. These are easily identified by velcro closures.
Hand puppets have large cavities inside with nooks and crannies to hide
things.
Tissue boxes. The rectangular ones. They take out the tissue and add
thngs then put the tissue back on top. It does not matter if the opening is on the top or down the side both work.
Inside of picture frames, between the pages of a calendar. CD cases, inside computer towers.
Look along the top of door frames and along the bottom of any door in the room as so many are hollow or can easily be carved out.
Gloves or hats are another favorite along the inside brim or in the fingers.
The tops and bottoms of venetian blinds. You can pull of the
little end tabs and hide stuff in the bottoms.
A 6 ft bookcase can be emptied silently and moved silently to find things underneath it.
*** Do not oil squeaky drawers. Squeaks are your friends at 3 am.****
Tucked between the layers of folded clothes. Inside pockets of folded
clothes. Some jackets have hidden inner pockets. Inside the coat or
jacket lining.
Unused pads. They can open them, put pills in and reseal.
At the bottom of the dirty clothes hamper, under the dirty clothes.
In hall closet behind stored items rarely used; back of closet under the
'cubbies', in storage containers that you rarely look in e.g., holiday
stuff.
Be sure to search your OWN stuff. Your purse hanging besides you makes a great place for someone to slip stolen candy into at the store and then retrieve it while you're busy putting groceries away.
Behind your own dresser. All child has to do is discreetly bend down and
grab it as they walk past the bedroom door.
School folders or binders with pockets or that are covered in plastic.
Tied into hair.
The hems of clothing. It's very easy to take a couple stitches out of the hem on the underside of a skirt or pair of pants.
Your plants...the stuff will be wrapped in a plastic baggie if needed and shoved down into the dirt.
Contact lens cases.
And Last but not least…
You will be AMAZED at what you find in the inside and on the outside of
your car. There are a zillion places to hide stuff in there. The ash
trays, the pockets, the space between the back and the seat, there's a
hollow space that can be pried off and used that surrounds the lock and
window controls, storage spaces built into the floor, there's light covers in there, floor pads, underneath the carpeting, in air freshener containers, in magnetic key containers that can be filled and then attached underneath the car (always get suspicious when kid drops stuff on the ground and has to kneel by the car to reach what looks like beside/under it), stuff shoved under the handle of the outside door, stuff wedged into the small bit of open area around the glass of the sunroof that you can feel into when you pull back the cover to expose the glass roof.
Is there anyplace we've forgotten? If your child has a favorite hiding place that isn't listed here, please share in the comments section below!
So without further ado, here is a list of places to check when tossing your childs room:
Bed frames, any hollow part of a head or foot board
Look for slits in the seams of a mattress or box springs,
between the mattress & box springs
also look for the lining of the box springs to have been loosened to
provide a hiding place
In boxes or storage bins under the bed
Check the "legs" of plastic storage modules or cubes
Look in shoes, especially the toes, and again, especially if under the bed
Look in dirty socks left around, or if stuffed in shoes
Check pockets of clothing in hanging in the closet
Check to make sure a baggie isn't hung on the hanger with a clothing item hung over it
Check to make sure moldings haven't been loosened and contraband hidden
behind them
Check drawer bottoms by removing the drawer completely and ensuring
nothing is taped to the bottom
also check the inside of the dresser unit with the drawers removed, as
well as under the dresser and behind any mirror
check lamps. Some have a paper or felt bottom that easily comes off and
is not noticed as the lamp sits on it. Inside of some lamps this area is hollow.
check to make sure screws are tight on switch boxes, outlet boxes and
lighting fixtures as they make a good hiding place
Check to make sure smoke alarms in bedrooms have the battery in place, and not something else.
Check inside electronic devices, especially those that can run ac/dc and are plugged in. The storage compartment for the batteries or alternately, the cord, are great stashes. Also check to make sure the device isn't "cracked" open. Inside them is a great stash
Look for "Strings" coming out of openings. Pull on the strings to see
what is attached
Check inside chapstick containers or Altoid and TicTac containers.
Make sure TicTacs ARE Tictacs
Check M&M, Skittles and PEZ or other candy containers to ensure that they in fact hold candy and not pills.
Check makeup and especially lipstick containers. Empty ones are often
used as stashes
Check bottles of cologne or lotion to ensure they don't have booze in
them, if you find an empty shampoo bottle in the bedroom, or mouthwash
bottle, sniff for booze rather than shampoo or mouthwash
Check trash containers for "lumpy" wads of foil or tissue that can contain pills, powder or gummy tarry substance
Check inside the clothes hanger rod if it's hollow
Also check the inside of closet ceilings for taped envelopes etc
Check that books are actually books, and not been razored out of the
middle of the pages to create a stash
Also check behind rows of books in the book case.
check that tampon carriers actually have tampons in them, also check
feminine "supply" boxes to ensure they have only supplies in them
If you find Eye drops, nose spray, or Hemmoroid ointment or suppositories,
suspect "sniffing" or "huffing"
If your child has "Whiteout" or "Canned Air" or any kind of spray can in their room, especially if they go through it quickly suspect huffing.
Check "tool" kits and makeup bags as well as art supply and craft kits to ensure they're what they appear
If you find blackened spoons, or blackened aluminum foil, look closer for evidence of other uses.
Make sure that Pens have ink cartridges in them and not a joint or pills or a "rock"
cdplayers....pills can sit quite nicely on a loaded (pun?) cd disc......
Make sure that all meds in the house are kept in a locked box or cabinet and that only the parents actually have the keys. Many times, kids get their drugs from the bathroom medicine cabinet
In bathrooms, check all liquid containers to ensure they contain the
labled liquid. Any clear booze such as vodka with some scope or Listerine in it takes on the appearance of mouthwash
Also watch for nite time liquids or vanilla extract bottles due to their alcohol contents
Check the toilet tank and tank lid for stashes as well as under any seat cover as nobody thinks to look there
Money can lie flat taped under a toilet lid...only works for stolen money
Check the toilet paper tube. Most are two pieces with a spring
inside, leaving plenty of room for a stash
Towel rack tubes are another stash as many are hollow
Make sure and check heating and air vents and cold air returns. If the
grills are loose or screws are missing they might be used as a stash
Also, make sure that carpet is stretched and tacked down, if it's loose or has "cut" places, usually under a bed or piece of furniture, the pad can be removed and a stash can be under the carpet and in a cut out section of the padding
The arms/legs or even heads on baby dolls (and action figures) are often
removable - revealing a hollow body inside.
Also any stuffed animal toy that has moving parts. There is usually a
battery compartment. When the moving parts stopped working, child threw
those away and used the extra space inside the stuffed animal to stash
things. These are easily identified by velcro closures.
Hand puppets have large cavities inside with nooks and crannies to hide
things.
Tissue boxes. The rectangular ones. They take out the tissue and add
thngs then put the tissue back on top. It does not matter if the opening is on the top or down the side both work.
Inside of picture frames, between the pages of a calendar. CD cases, inside computer towers.
Look along the top of door frames and along the bottom of any door in the room as so many are hollow or can easily be carved out.
Gloves or hats are another favorite along the inside brim or in the fingers.
The tops and bottoms of venetian blinds. You can pull of the
little end tabs and hide stuff in the bottoms.
A 6 ft bookcase can be emptied silently and moved silently to find things underneath it.
*** Do not oil squeaky drawers. Squeaks are your friends at 3 am.****
Tucked between the layers of folded clothes. Inside pockets of folded
clothes. Some jackets have hidden inner pockets. Inside the coat or
jacket lining.
Unused pads. They can open them, put pills in and reseal.
At the bottom of the dirty clothes hamper, under the dirty clothes.
In hall closet behind stored items rarely used; back of closet under the
'cubbies', in storage containers that you rarely look in e.g., holiday
stuff.
Be sure to search your OWN stuff. Your purse hanging besides you makes a great place for someone to slip stolen candy into at the store and then retrieve it while you're busy putting groceries away.
Behind your own dresser. All child has to do is discreetly bend down and
grab it as they walk past the bedroom door.
School folders or binders with pockets or that are covered in plastic.
Tied into hair.
The hems of clothing. It's very easy to take a couple stitches out of the hem on the underside of a skirt or pair of pants.
Your plants...the stuff will be wrapped in a plastic baggie if needed and shoved down into the dirt.
Contact lens cases.
And Last but not least…
You will be AMAZED at what you find in the inside and on the outside of
your car. There are a zillion places to hide stuff in there. The ash
trays, the pockets, the space between the back and the seat, there's a
hollow space that can be pried off and used that surrounds the lock and
window controls, storage spaces built into the floor, there's light covers in there, floor pads, underneath the carpeting, in air freshener containers, in magnetic key containers that can be filled and then attached underneath the car (always get suspicious when kid drops stuff on the ground and has to kneel by the car to reach what looks like beside/under it), stuff shoved under the handle of the outside door, stuff wedged into the small bit of open area around the glass of the sunroof that you can feel into when you pull back the cover to expose the glass roof.
Is there anyplace we've forgotten? If your child has a favorite hiding place that isn't listed here, please share in the comments section below!
Wednesday, August 24, 2011
Warning: Parents may appear hostile
Understandably, a recent story about a mom feeding her son hot sauce on the Dr Phil show has garnered quite a bit of attention, much of it negative. If you look at the comments on Facebook or other sites, both parents and non-parents (who frequently tend to be the most critical of other peoples parenting) are up in arms about what a horrible mother this woman is. And while I can't condone what she did, my first reaction when reading about that story was "that poor woman". I posted the article to a RAD support group and the reactions were all similar to mine. Nobody condoned the actions, but almost every comment was along the lines of "I can totally relate to that poor womans frustration".
For starters, the child was adopted, which put him at risk right there for some level of RAD. Given the mothers' statements such as "When [he] gets a cold shower, I am at the end of my rope" and "Nothing's gotten the results that I want.", I can 100% sympathize with where she's coming from.
Few things are more frustrating than knowing your child needs help and not only not being able to get it for them, but then having to try and deal with it all on your own. Before I began really studying RAD and how it affects the brain, I frequently felt the same way. Well-meaning people would give all sorts of advice, swearing up and down that it would solve the problems, but it never did. Nothing conventional that we tried made much difference at all (and when it did, it was short-lived). So yeah, I've felt this mothers' frustration, I know where she's coming from, and apparently so do many of the other RAD parents I've spoken with.
The help IS out there. But very few people/agencies are willing to give it up easily. I know from personal experience how hard it is to get people to recognize that there are bigger issues going on that your child needs help with. I knew for years that my RAD was depressed and the root cause of almost all of her problems were due to her mother. But it really did take years of pushing before anybody really listened. I had to kick and scream and flood peoples email boxes, I had to take time off work and demand face to face meetings, I had to push through all the bureaucracy and resistance to get her the help I knew she needed. And I had to do all this while dealing with the frustration that nothing I was doing was working and my RADs behavior wasn't changing. It felt like I was being attacked from both sides when all I wanted to do what help my RAD get better.
"Parents appear hostile" --- us RAD parents might as well make t-shirts with that on em. Because at times we do. We appear hostile towards our children, we appear hostile towards the agencies that think they are helping us. We appear hostile towards the entire world at times because we have to. We can't sit back and wait for help to come to us because it won't.
Let's hope this poor woman can now get the help she needs to deal with her sons issues before her frustration pushes her over the edge and it's not just hot sauce next time.
Monday, August 22, 2011
Disposable income? yeah right!
During a recent camping trip I was looking around at all our ‘neighbors’, noticing all the trucks/jet skis/boats/etc they had. Being a friendly guy (for the most part) I spoke with several of them and they don’t make a ton of money or have a large inheritance but they can afford all of this stuff. So I got to thinking... I make more money than many of them and yet there’s no way I can afford this stuff. So where does the money go? Granted, we live in San Francisco where it’s really expensive, but we rarely eat out, we don’t go to amusement parks, or plays, or the opera. We do, from time to time, take smaller day trips but that doesn’t really add up to much. That’s when I realized where much of my disposable income goes – medical costs!
I have pretty good insurance (thankfully!) but that doesn’t cover 100% of everything. I sat down and roughly guestimated what we spend out of pocket and it comes to somewhere in the neighborhood of $400+ per month when you average it out over the year. That includes prescriptions, medical tests, co-pays, therapeutic care, eye and dental care, etc. It’s scary how quickly all those co-pays add up. And that doesn’t include the larger, occasional expenses such as surgeries, inpatient care, braces (oh yeah, ODD is due for those too), and of course Vet bills (did I mention we have 3 cats and 2 dogs?). Of course, compared to many other special needs parents, this is nothing more than a drop in the bucket - I've spoken with some who pay thousands per month easily. But, we do it for our kids so to me it's worth every penny.
But... there goes my new truck and jet ski. I wonder if my doctor will let me borrow hers? After all… We paid for it!
I have pretty good insurance (thankfully!) but that doesn’t cover 100% of everything. I sat down and roughly guestimated what we spend out of pocket and it comes to somewhere in the neighborhood of $400+ per month when you average it out over the year. That includes prescriptions, medical tests, co-pays, therapeutic care, eye and dental care, etc. It’s scary how quickly all those co-pays add up. And that doesn’t include the larger, occasional expenses such as surgeries, inpatient care, braces (oh yeah, ODD is due for those too), and of course Vet bills (did I mention we have 3 cats and 2 dogs?). Of course, compared to many other special needs parents, this is nothing more than a drop in the bucket - I've spoken with some who pay thousands per month easily. But, we do it for our kids so to me it's worth every penny.
But... there goes my new truck and jet ski. I wonder if my doctor will let me borrow hers? After all… We paid for it!
Friday, August 19, 2011
RAD Monkeys?
Oddly enough, I was reading an article yesterday about a study done on monkeys that linked anxiety and anti-social behavior with the stress of being separated from their mothers at a young age. Sound familiar? Sure does to me.
Sadly, the poor monkeys that they studied never fully recovered from the trauma.
In both humans and monkeys, stress releases the hormone cortisol which is used to mobilize energy stores and aid survival, but prolonged increased levels can lead to developmental impairment of some regions in the brain and actually results in lower levels of cortisol later even after several years of living a “normal” life. And if that isn’t bad enough, cortisol is linked to the immune system and is a powerful anti-inflammatory. Adults with a history of childhood maltreatment have elevated inflammation levels, which is one of the key factors that contribute to conditions such as cardiovascular disease, type-2 diabetes and dementia.
So while we can slowly work on (but seemingly never cure) the mental and emotional problems caused by early childhood trauma, science has yet to figure out how to fix the physical damage.
Does this mean our children are doomed to lives of poor health and an increased likelihood of horrible diseases? I certainly hope not. If there is one thing I tried to take away from this article, it’s that science is now aware of the physical damage in addition to the mental/emotional, which means they can find ways to repair (or at least minimize it).
Can’t they?
Sadly, the poor monkeys that they studied never fully recovered from the trauma.
In both humans and monkeys, stress releases the hormone cortisol which is used to mobilize energy stores and aid survival, but prolonged increased levels can lead to developmental impairment of some regions in the brain and actually results in lower levels of cortisol later even after several years of living a “normal” life. And if that isn’t bad enough, cortisol is linked to the immune system and is a powerful anti-inflammatory. Adults with a history of childhood maltreatment have elevated inflammation levels, which is one of the key factors that contribute to conditions such as cardiovascular disease, type-2 diabetes and dementia.
So while we can slowly work on (but seemingly never cure) the mental and emotional problems caused by early childhood trauma, science has yet to figure out how to fix the physical damage.
Does this mean our children are doomed to lives of poor health and an increased likelihood of horrible diseases? I certainly hope not. If there is one thing I tried to take away from this article, it’s that science is now aware of the physical damage in addition to the mental/emotional, which means they can find ways to repair (or at least minimize it).
Can’t they?
Thursday, August 18, 2011
More on Cause and Effect....
My dogs are pretty cute (to me anyway). They are also pretty smart, but they have animal brains and, although trainable, they seem to lack solid cause and effect thinking. They can learn to sit, come when called, and even dance, but they can’t quite figure out that if they corner the cat it WILL claw them. So they do it over and over and over.
RADs are the same way. They have a severely diminished ability for cause and effect thinking. Which makes sense if you think about it – if a baby cries and gets fed one time, then ignored the next time, then yelled at yet another time, it never knows what to expect. Since the brain learns via repetition, the brain never grasps the concept of cause (I cry) and effect (I get fed).
This is one reason why typical parenting methods such as charts and rewards don’t work (no matter how many times people say it will). The brains of traumatized children tend to run on a heightened state of arousal and stress, which inhibits their use of the cortex by funneling that energy to the lower, more primitive, parts of the brain. Their brain state makes them unable to consider the potential consequences of their actions. For these children, immediate reward is the most reinforcing – delayed gratification is almost impossible. Without input from the internal regulating capabilities of the cortex, the brainstem acts reflexively, impulsively and sometimes aggressively to any perceived threat.
It is precisely this reason that it does absolutely no good to use the “normal” methods. When a RAD is dysregulated, they aren’t in their “right mind”. They aren’t able to reason, they aren’t able to think logically, they aren’t able to do much of anything except slip into survival mode. In his book The Boy Who Was Raised As A Dog, Dr Perry states “fear, quite literally, makes us dumber”, and if you think about it that makes total sense. Even the smartest person isn't concerned with how s/he is going to make money when faced with a life or death situation.
So if you have a RAD in your house, or if you are caring for a RAD, don’t bother trying to reason with, or discipline, or hope to make any difference in future behavior when the child is dysregulated. You have to get them regulated first, before anything you say will sink in. This is the premise behind Heather Forbes’ Beyond Consequences method, which seems to be one of the preferred methods among parents of RADs. If you are a caretaker of a RAD – no matter how infrequently – you owe it to him/her (and yourself if you want to keep your sanity around a bit longer!) to at least give it a read.
RADs are the same way. They have a severely diminished ability for cause and effect thinking. Which makes sense if you think about it – if a baby cries and gets fed one time, then ignored the next time, then yelled at yet another time, it never knows what to expect. Since the brain learns via repetition, the brain never grasps the concept of cause (I cry) and effect (I get fed).
This is one reason why typical parenting methods such as charts and rewards don’t work (no matter how many times people say it will). The brains of traumatized children tend to run on a heightened state of arousal and stress, which inhibits their use of the cortex by funneling that energy to the lower, more primitive, parts of the brain. Their brain state makes them unable to consider the potential consequences of their actions. For these children, immediate reward is the most reinforcing – delayed gratification is almost impossible. Without input from the internal regulating capabilities of the cortex, the brainstem acts reflexively, impulsively and sometimes aggressively to any perceived threat.
It is precisely this reason that it does absolutely no good to use the “normal” methods. When a RAD is dysregulated, they aren’t in their “right mind”. They aren’t able to reason, they aren’t able to think logically, they aren’t able to do much of anything except slip into survival mode. In his book The Boy Who Was Raised As A Dog, Dr Perry states “fear, quite literally, makes us dumber”, and if you think about it that makes total sense. Even the smartest person isn't concerned with how s/he is going to make money when faced with a life or death situation.
So if you have a RAD in your house, or if you are caring for a RAD, don’t bother trying to reason with, or discipline, or hope to make any difference in future behavior when the child is dysregulated. You have to get them regulated first, before anything you say will sink in. This is the premise behind Heather Forbes’ Beyond Consequences method, which seems to be one of the preferred methods among parents of RADs. If you are a caretaker of a RAD – no matter how infrequently – you owe it to him/her (and yourself if you want to keep your sanity around a bit longer!) to at least give it a read.
Wednesday, August 17, 2011
Diabetes Management and RAD....
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).
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).
Subscribe to:
Posts (Atom)