You'll have to excuse me for a moment, I'm about to vent.
I got on facebook this morning, just to see what is 'new'. And discovered, much to my dismay, that what was 'new' was that one of the moms in the network of support groups for parents of RAD kids was murdered by her daughter some time in the last few days - her body was found yesterday. I had not personally interacted with her, because there are several different groups in different places (Yahoo, Google+, Facebook, etc) and I choose to limit my involvement to facebook, and she was not in that particular group. But we ALL feel a DEEP camaraderie because we deal DAILY with the challenges of RAD, and we understand each other on a level that those who don't know RAD just simply can't understand us.
I'm betting, even now, that some of you are saying to yourself 'what is RAD?'. See that is part of the problem. We need an awareness campaign similar to the type of thing that has been going on in the Autism/Austpergers community over the last few years. People need to understand that when foster children get adopted, that is not the end of the road. There is not always a 'Happily Ever After' for many of these kids. When children survive trauma at a very young age, it takes specialized help to get them to heal in a way that allows them to have a normal relationship with those who want to love them. And unfortunately that help is #1 difficult to find, #2 challenging to implement, #3 expensive, and #4 often not covered by insurance or the medicaid that these children are 'covered' under. Indeed, many counselors don't even know that specialized training is needed in order to be able to effectively help these children. Honestly, googleing 'RAD' doesn't even bring up an answer to what it is in the top five entries - as was pointed out by an astute reader. RAD is 'Reactive Attachment Disorder' - it comes about when a child is traumatized early in their life, and, thus becomes impaired in their ability to form bonds with other people who might come into their life later, and want to love them. It can also effect brain development in other, unexpected ways, depending one when the trauma happens and how severe it is.
The daily challenges are exhausting. And my two and a half RADishes are not even that severe, probably actually not even R-A-D as much as A-A (Attachment Affected - which is not an official diagnosis that is even 'in the book' just a better description of what we are dealing with) we usually just describe them as having 'attachment issues'. In fact, my involvement in the RAD groups has mostly helped me in that I often come away with a clear view of how bad it could be if they were more severe. But these kids, even the less affected ones, are injured on such a primal level that they instinctively push away anyone who wants to love them. They say/do things that undermine your ability to want to love them. They also have 'brain development' issues because of when/how their emotional injuries took place. For instance, they often have a complete inability to 'sense' when they are full when they are eating, so the parent has to do that work for them, telling them when they need to be done eating. And that is just one SMALL example of the 'hand's on' style of parenting that they require (many of the other parents are dealing with children who are still in diapers at age 12, or other 'fun' bathroom related issues!). 'Vigilant parenting' is such an understatement as to be completely laughable. OF COURSE we have to be vigilant. If even ONE instance of RAD behavior is let to slip by, it will multiply and grow exponentially.
One of the biggest frustrations we all face, though, is the judgement we get from those around us that don't understand RAD. And let me stop right here and say - if you have done this, don't beat yourself up - everyone does, you are not alone. Heck even >> I << did it to other parents of RAD kids, before we got our kiddos!
But our kids' behaviors often come across as sweet and cute to those who don't know them well, or, even, sometimes to those who DO know them pretty well, but don't understand their 'issues'. And our responses, as parents, to those 'sweet and cute' behaviors will often come across as somewhat harsh. It's so tiring to know that people whom I care about sometimes judge me to be part of the problem because I am being 'too harsh' with them. It's a TOUGH style of parenting, and not our first choice of ways to have to treat them, but there are indications that it WORKS, we have SEEN it help in our own kids' lives, so we DO it because we want what is best for our kid. Please don't judge us.
It's also TIRING. And often people don't understand just HOW tiring it is, because when they (KINDly) take our kids for us for short periods of time, the kids are angelic! "What could possibly be so hard about parenting these wonderful children?" But the kids save their 'behaviors' for when other people are not around.
The human spirit is incredibly deeply programmed for survival. And when the psyche is injured at a young age, it becomes VERY defensive by nature and VERY capable of manipulating and playing the situation to it's best advantage. These kids are PROFESSIONALS at this process. They are generally very sweet in public and to those who they do not see on a daily basis. They save their 'behaviors' for those who are trying to get the closest to them, because, deep down inside, they know that we hold the most power to hurt them again. So they work VERY hard at making SURE we can not get close enough to have that power.
There is help available. Nationally there are probably several hundred, maybe as many as a thousand counselors who have specialized training in helping these children heal. You do the math, if you are 'lucky' and live in a large metropolis, you MAY get to choose between two counselors who can help you, and chances are they don't take insurance, and CERTAINLY aren't on the Medicaid plan that foster/adopt children are supposedly 'covered' by. And the other frightening thing is that a counselor who does not have the specialized training will often only make things WORSE, because they don't understand the unique challenges, and the child often manages to play the counselor against the parent (another skill of these cherubs - triangulation - playing one adult against another) and parents have actually been accused of various abuses by counselors who believed the lies that a RAD child so charmingly, and convincingly, told them.
Oh, yes, that is one of the other BIG challenges. Lies are second nature to these kids. They will deny that they sky is blue if they think it will somehow benefit them if it is green instead. And they will stand there and stare up at you with a blue sky-background around your face and insist, with a sweet smile on their face, that the sky is green.
Try living with THAT on a day-in-day-out basis.
I'm not trying to whine and complain here, I guess I'm just trying to do my part, in getting the awareness out there. Please, if you know a parent of a RAD child, don't judge them. Support them. You may not understand them, you may think that things are 'odd' - but don't judge them. Please. Pray for them, and help them, if you can. And if you really want to make a difference, educate yourself, (www.attachment.org is a good place to start) and help get the word out, so that others will become aware of this challenging 'disorder' and perhaps we can work some change into the 'system' and actually get these kids, and the families that are trying to help them, some HELP. Before any more members of the support groups are found stabbed to death in their own beds.
Well said. few know what it means to live day to day hour by hour with these kids. there is little reprieve from the behaviors except when someone from the outside is watching. Sadly these are the children's best coping skills.... and sadly, often love is not enough. BUT with patience combined with that love and help from above in getting the right help at the right time from someone who won't do more damage... we can make a difference, right?! It's the hope we cling to.
ReplyDeletethat is the ONLY thing that keeps us going. Some kids DO heal.
DeleteSharon,
ReplyDeleteYou said that so well!! Is okay if I link my blog to yours and post part of what you have written on my page? I am right where you are and it is so difficult sometimes. I am not able to express our daily struggles as well as you have.
thank you. Share away - this needs to go viral if possible!! People just don't KNOW! Our society needs to be AWARE - and something needs to be done to fix the broken system that is failing these kids and the families that are trying to help them. Our kids are not as severe, so I guess I feel I can be at least part of that voice that gets the word out. Please, share all you like!!!
DeleteGreat post!
ReplyDeleteI found your blog through Jenny's post (and links). I will be writing a post, as well, with excerpts and links. :)
I, too, am a Mama of a RADish. We adopted 3 older children 5 years ago. All 3 have RAD, to varying degrees. The older brother was so over-the-top RAD, that we had to find a new home for him after only 16 months here. It was not safe to keep him in a family with 5 younger children. The #2 daughter is a quiet, mild mannered young teen. She has no outward signs of RAD, but definitely has problems with attachment. Then there is our youngest daughter . . . who was molested for many years by the older brother. Sadly, this daughter's RAD escalated to the point that I was afraid I would be the mother found dead in her bed. My daughter is now living in another state, at a Residential Care Facility. So sad. So hard.
Thanks for sharing your heart on this much misunderstood topic. Yes. We must educate people about RAD. We must fight for our children, and their need for treatment. We must stop judging those who parent differently than ourselves, even if/when we don't understand it.
Laurel
mama of 12
sorry - I tried to reply earlier, but the website was locked up somehow and wouldn't let me reply! Yes, please feel free to take excerpts as you wish - I have amended the blog, just a bit, to include a bit more of a definition of what RAD is, and a link to a website, where people can go, to begin educating themselves.
DeleteI wrote a post with excerpts and a link to yours, today.
DeleteThanks for speaking up about the reality of RAD.
Laurel
mama of 12
Thank you so much for updating your blog here, Sharon!! I am very interested in researching this and am going to consume the website you listed. Almost 1AM here, so will have to continue tomorrow, but wanted to let you know how much I appreciate your spirit and openness to help those of us not intimately involved with this to understand.
ReplyDeleteand I truly thank YOU for taking the time to read and learn what you can about this. It encourages me, greatly, to know that what I wrote impacted you to learn more about RAD. Thank YOU for taking the time to write and let me know how I could improve my post, and letting me know that you are reading more about RAD because of it.
DeleteWe have friends who have a RADish and he is a wonderful boy. But we KNOW they have issues.
ReplyDeleteWhat is so interesting is that I was some place where he was in a group event and one of the organizers set back with me (my son was there too) and proceeded to tell me how he REALLY doesn't have anything wrong with him it's just the parents (not knowing I know the boy, and parents). Then, not more than a couple months later, very similar situation with the same boy occurred again.
I'm not sure what it will take to get a better knowledge of this disorder out there. You would think with all these people in the headlines adopting that the situation would get addressed. Who knows.
That is super sad about the mom, knowing she was trying to provide what was lacking, just sad!
It IS tough, it's a hard line to walk. There are often SO many emotional burdens (baggage?) carried into an adoption, from BOTH sides. Particularly if the parents adopt after a long, unsuccessful battle with infertility. There can be SO much riding on that child, that even a NORMAL child would have a hard time remaining that way. But I still think that awareness can make a rather HUGE difference in this case.
DeleteI'm one of those scorners, when the 'awareness' games come around for breast cancer. How will it really help my friend who is battling breast cancer if I post the place I like to set my purse when I come home, or the color of my bra? But this is one of those times when awareness WOULD help.
Imaging how much better my interactions would have gone with Mayahna's teacher last year, if she was simply AWARE that RAD kids tend to lie, alot. But not to their teachers, so much as to their mothers. She might have actually been willing to help me with the question of whether Mayahna had napped each day or not. And maybe the school would not have threatened to send out the truancy officer when we kept her home for lying and stealing, because her consequences involved her being in my physical presence for 72 hours (three days, because she stole from three of her siblings). And perhaps we would not get so many odd looks when we decide to still take her to church when she is on 'no talking' consequences for lying,and someone says good morning to her, and she doesn't answer back.
None of it is BIG stuff (at least not for me - other parents on our boards have faced some rather big stuff), but when it's constant little stuff, and people giving you blank stares when you even say 'attachment issues' - not having a CLUE what that would even mean - she seems well enough, she's not slobbering in the corner. See that is part of the problem too, it is an invisible disorder. It's not something you can see like the slanted eyes of a downs-syndrome kid. The child looks normal. Part of the ACT that they put on, is to be VERY sweet and overly pleasant. So people often end up thinking "How could anything possibly be 'wrong' with that child" (which often leads directly into "It must be the parents").
DeleteI'm not a headline reader - what do you mean when you say "all the people in the headlines adopting' - are they adopting older children? Out of the foster system? Because while infants can sometimes develop some mild attachment-related issues, simply due to the fact that they are separated from their birth mother, it is MUCH more rare, and much more mild. It's the older-child adoptions that tend to end up on this road. It's the children who have been abused, and/or neglected during those crucial first few months/years of development when they are supposed to be learning trust and when the adult in their life is still perceived to be a part of themselves, and then that adult treats them so poorly, and they don't have the tools, emotionally, to even BEGIN to know how to process that. And, complicating things further, they are often then shuffled through various foster homes, (our seven-year-old was in FIVE in just over a year, having been removed from her birth mother at 11 months, so when we got her, at just over two, I was mom number SEVEN - why SHOULD she trust me!?) before they are 'lucky' enough to be adopted. In the process they have learned 'survival skills' that often interfere with their ability to relax and allow that new parent to BE the parent and care for them.
DeletePart of what causes an infant and a parent to bond is the infant's NEED for the parent. Then, maturity gradually develops, and the infant gradually becomes an independent person, and the bond changes and morphs to the point of autonomy. These kids come into the relationship with their new parents not 'needing' them, because they have learned that needing an adult is a dangerous position to be in. Building that all-important bond is immediately challenging, to say the least. They are very good at 'looking fine' and, just to complicate things further, they are also VERY good at manipulating.
Honestly, people really just need to READ about it, if they are going to even begin to understand it. -- ah -- I know -- someone needs to write a captivating 'novel' about RAD, and then Hollywood needs to turn it into a best-selling movie. THAT would get the word out!!
Wouldn't that be nice?
I was thinking about Mia Farrow or Angelina Jolie, Madonna....all these and you don't hear about it...but maybe it's because they have the money to get the help like you were saying.
DeleteThe child I'm thinking of the parents got him as an infant...yet he has it. I'm sure it's different with each person.
yes, it is very different, for each child, and yes, the money would make a HUGE difference, because there is help out there, and if money is no object, it helps alot. But when one is dependent on using the insurance-sanctioned providers and they have no clue what you are talking about when you call to ask about 'attachment therapy' it gets discouraging very fast. Particularly when that 'insurance' (it 'insures' NOTHING so I actually hate that word)is the one that is SUPPOSED to cover the needs of these kids, after they are placed, and it has a gaping hole, in the area where they need the most help.
Delete(and no, even with all of those in the headlines, I was not aware. Honestly, I dont' read them in the check-out line, I don't read the paper, I don't watch the news)
oh - and - don't assume that just because the child was gotten at birth, that his injuries are the 'fault' of his adoptive parents. Lon (yes, the man I'm married to) was born to his biological parents and raised by them, and has some (mild) attachment issues, because he was not a 'wanted' child. All during his time in his mothers womb she worried about the fact that they were having a child so SOON (12 months) after being married, and whether she was ready to be a mother, etc. He also had a ROUGH delivery, which can also play in in ones emotional development. There is SO much about emotional health that we simply to not understand. I guess that is part of my point. People should not be so quick to judge, when even the 'experts' don't know all the answers.
I don't watch the news or read those magazines either, but one look through online "news" always includes that news, like that is news. We have banned FOX News online, because they are the worst to put that up, that and other inappropriate stuff! We haven't had TV in 7 years almost, have not missed it either. Although when I'm working out...6 screens worth. o-O too bad they can't cover something really worthy, most of the time.
DeleteI so agree with when, or even if adopted. I worked with a girl who had a little girl, she got pregnant and wanted a little boy so bad and when she found out it was another little girl, she cried off and on at work the whole pregnancy. I often wondered how things turned out in the long run for her.
You and Lon both have quite the history with your childhoods...that must have been a bonding point for you?
not really a bonding point, no, since he was in complete and TOTAL denial that there was anything wrong with him until the last three to six years or so. It almost drove the marriage into the ground. He's getting help now, though.
DeleteThat's awesome that you are working together through this! It's worth it, I know many who divorce who would love the opportunity to go back and work through it. Happy Sabbath!
Deleteworking is the right word. It is a lot of work. But I suppose life would be a lot of work no matter what path I was on, huh? I think that is one of the really good things about being on facebook and on here. I'm connected with people like Traci and my friend Charlene, who is a young widow, and others who are facing other struggles. It helps me to know that while my path may be difficult, every one of us has a 'struggle' we must face and face it we must. Fortunately, as Christians, we know that God will be there WITH us in it!
DeleteVizcarra? I worked with her husband for years at Adventist there in Portland. Most awesome, caring anesthesiologist!
DeleteYes, we went to the same church when we lived in Portland. Not a CLOSE friend, but a friend just the same and we have gotten a bit closer through conversations we have had on facebook.
DeleteI have three children who suffer with RAD and PTSD, so I totally get the relentlessness of these disorders. For the first four years, we were practically ostracized in the places where we had expected to receive the most help and acceptance. People looking in from the outside buy the same fairytale that we held dear before we received our children--that love and consistency will fix everything in a few months and if it doesn't, it's because we are doing something wrong.
ReplyDeleteFive years in, things are better than they were. But we've spent those five years completely devoted to learning what our children's needs are and how we can try to meet them, going to therapy, working with in-home supports, and now schooling at home. I have a blog, but I'm too exhausted to post and things are happening so fast that by the time I have a chance to take a breath and write, the next thing is underway. We do get all of our children's services paid for by Medicaid, including intensive case management, trauma therapy, in-home respite, out-of-home respite, and about 25 hours per week of in-home support per child. (Our kids are on the extreme end of the RAD scale.) Medicaid also pays for a family support worker who is there to help us keep our own heads above water so that we can keep going in the face of constant crisis. Some of these services have been specially contracted for by Medicaid with non-network providers because Medicaid is legally obligated to provide what is medically necessary for my children and they had no qualified network providers available. Besides relying on divine providence, learning our state's public mental-health system and how to get what our kids need from it has been one of the main things that has held us together as a family. Our children's care costs many times our annual income, but without it, our children would be unable to function safely in a family environment. Even so, I have to be constantly on guard against another assault.
When our kids were still in public school, we started off each year by providing their new teachers with a letter explaining our children's condition and attached a handout we had received from our children's therapist on the subject of the way children suffering from RAD typically interact with the school system. Most of the time, this helped--as long as the teacher didn't think he or she knew better than we did what was going on with our child. As a parent, I find that I have to tell other people who interact with my children what we expect from them with respect to our children's illness and, in some ways, give them permission to tell us when they think our kids are lying or manipulating.
More awareness from the public at large would be great! But meanwhile, we have to educate everyone who has significant contact with our children. Our mental-health team meets monthly in our home to ensure that everyone is on the same page and we often invite people who have a lot of contact with our kids to come and be a part of that process. Our youth pastor is on our team for that reason and we held meetings at the school when there was a need to have teachers get a fuller grasp of what was going on with our kids.
WOW! Do you have birth children too? What state do you live in? I need to pursue the whole 'Making Medicaid pay' thing - the free clinic MD that only comes in a few days a week, and the therapists have to refer you to her, if they think your child needs a 'diagnosis' - when she came in, and reviewed my son's file, she said "He can't be Austistic, his IQ is too high" - so we took him to an independent Dr. and she diagnosed PDD - essentially an atypical autism. But it cost us over $3K out of pocket to get that diagnosis.
DeleteThe school district will not work with us unless our children are enrolled full time. GRRR... even for speech, which I was willing to bring them to the school for, during a GROUP session, that they would not end up costing the school district extra for at ALL. (my district is well known for it's hostility toward homeschoolers)
I'm so tired of FIGHTING to get them what they need.
I need to figure out ways to get the state to pay for the things that we need, including paying for my husband and I to have counseling to keep us on the same page and working together. ugh.
it makes me so TIRED, how HARD it all is!!
oops - too LOW - she said his IQ was too LOW to be Autistic.
DeleteIt is exhausting and frustrating and things shouldn't be this way. But they are. I have no children other than my adopted children, who came to us at ages 9, 8, and 4.
DeleteEvery state's Medicaid system works differently, but all of them have to pay for medically necessary covered services.
When learning how everything works, NAMI is a place to start. There are local chapters in most cities. I find that parents who have learned the system make great resources when it comes to discovering what can actually be had and how to get it. Peole working for/within the system have typically been much less helpful to me, since they hear "no" a lot from their superiors and don't have a lot of experience with getting to "yes" themselves. There is always an appeal process, which virtually always starts with getting a written denial of requested services. If I accept the spoken "no" of the agency, but don't insist on a written denial, I have nowhere to go with it. A written denial triggers our appeal rights.
The Nigliazzo Advocacy Center for Attachment Disorders used to have a packet on the website under Family resources that described ways to be an affective advocate. Always assume that you are going to have to fight for services and document, document, document. Your local center for disability law is another good resource. There are a lot of good, experienced people working in these areas of advocacy. At first, I thought I would have to do it all myself. But there are so many around here who have gone before me and now we are benefitting from their work and experience.
As far as the school-based services go, we school at home through an online charter school, so my son's IEP is in force and they provide accommodations and services accordingly. My older kids couldn't function in the middle-school social environment without getting into serious trouble and my youngest couldn't learn to read in public school. They are all having much more success schooling at home and because of the charter school status, we don't have to pay anything for curriculum or the special services. There are teachers available if my kids need them and there are academic requirements, which work out well for us, since my kids would fight me all the time if I were setting the standards. (I really do set them, but the kids see the faceless school as the "bad guy" most of the time.) The kids' attachment issues come into play less when there isn't a person (teacher) to fight against.
Our children's therapist sees my husband and me from time-to-time and talks at length with me every week when I take the kids to therapy to get a better handle on what's going on with all of us so that she can help us all keep going. That is all covered under our kids' therapy in my state. Any therapy with a child is made more effective by collaboration with the parents. We also have a Family Support Partner who is not a therapist, but who helps us with advocacy and provides emotional support. We have also gotten some sliding-scale counseling through one of the local church-based foster/adoptive agencies.
My older son shows a lot of symptoms of autism, but because we didn't know him until he was nine and his records before then show virtually no mental-healthcare, intermittant medical care (in-and-out of foster care in another state) and he switched families so frequently, it's been hard to tell what his true diagnosis is. His RAD and PTSD were so severe that we treated those first and now that it appears there may be more going on, we are trying to find out what else he may be suffering with. His trust issues run so deep that he has been here nearly five years and has only recently started to actually talk to his therapist about his past.
I feel for your struggle to get what your child and your family needs to have a workable life.
The really sad thing is that this has been an area of strength for me. I'm a fighter and a go getter and a 'lets fix this, and make it right for everyone' kind of person. When I was running a family child care business, before we got our kids, the state agency with oversight on our businesses started really MESSING with our regulations in a way that would have made it very difficult for us to do legitimate business. I could see that many women were just going to take their businesses 'underground' so that they wouldn't have to deal with the regulations any more. What I ended up doing was working with the state agency to help them re-write the regulations in such a way that they worked for EVERYONE. The state needed more oversight to keep the 'lower quality' businesses from hurting children and families, and the higher quality businesses needed to be able to work WITH the state, so that clients would KNOW that they were the good ones, and trust them with their children. In the end, I was on a committee to re-write the state regulation book, turned out the state was having a hard time finding an actual child care provider who could/would come to those meetings and help them understand our perspective. Sometimes that's all it takes, is one person who is willing to sit down and talk about what works and what doesn't. I wish we still lived in that state. We moved. And this state is not as progressive when it comes to serving children with things that they need. (it won't let me post a long reply, so I have to break it up...)
Delete
DeleteI am definitely going to work toward finding the resources that are out there though. I made an appointment with a person at the post-adoption resource center here. We see her on the 18th. We had started down that road about three years ago, just before we left on a three-month trip to the west coast (where we used to live) so I figured we would work on it more (getting with an attachment therapist, in particular) when we got back, in the fall. Just before we got home from that trip, my husband lost his job. So we spent three months with NO income, and then six more with about half what he'd had before. On April 25, 20011 he landed another well-paying job, and on April 27 we were hit by the tornadoes that tore through Alabama. We lost our home and many of our things, and we had some 'trauma' issues that FEMA helped us deal with, but that counseling ended 18 months after the storm, when the FEMA funding ran out. In all, it sucked up our family 'attention' for about a year and a half. Somewhere in the midst of that, we started taking our oldest son (the one that we suspected has Autism) to the 'free' clinic here in town. We did that for about 6 months, and when it became clear that there was not going to be a diagnosis and the therapist was only going to ever spend her time trying to get me to enroll him in school rather than homeschool him, we stopped going. Then we worked on finding a Psychologist who would diagnose him, and spent about two months (and $3000) on that process. That was completed in late November. She was awesome, supported our homeschooling path and gave us goals to work toward and suggestions of ways to improve what we are providing for him. We also recently took him to a naturalpath and received a lot of helpful suggestions from her, too. Now, I'm ready to focus on my youngest child's attachment issues. I'll admit right up front that I have contributed to her issues. She does her little RAD things, and I let them bug me, and I am at a point that I need HELP because I'm not sure if I even WANT to bond with this kid. Then I stop myself and I know, in my head, that I do, she is a sweetie. She's just a PILL. So, I know that the 'therapy' we get for her, is going to NEED to have some therapy/work on ME. And, personally, because of the healing that happened in MY heart due to stuff that happened in and around the tornado, I don't think I was ready to DO that work until in the last year or two. So, I know God's hand is in the timing of all of this, but it's just so hard, now that I am ready to DO the work, to find it so difficult to GET the help we need. Tired is sort of an understatement. The last few years have worn me out. I didn't even relate here, any of the things that have been happening between my husband and I the last few years.
But you have given me hope that I'll be able to find some help, and some people who have gone down this road before, etc. And get what we need to get to a more healthy place. So, thank you!