[Barksum]

We FINALLY had our appointment with the early childhood assessment team (I think that's what they're called) for DS (4 1/2). He's been with us almost 2 1/2 years and has had ongoing problematic areas that we've been working through with varying degrees of success. We finally pushed and got the referrals for a big assessment at the regional children's hospital.

I've been such a flag waver for FASD that it may seem ironic, but be gentle with me. I'm learning...oh, just all kinds of things...but one thing I'm learning is that there are "sides" in the adoption community and it doesn't do to get too vehement about some issues! LOL

After assessment by a team of physicians/therapists/etc the official dx is RAD. I bawled all through the consult at the end of the 5 hours of testing. It wasn't actually a surprise, but it was hard to hear. The psychiatrist said that some of DS's issues are resolving, but others are starting to escalate. Her reccomendation was 1) attachment therapy (duh!) and 2) get into a RAD parent support group. They also, mostly jokingly, suggested that we relocate to an urban area so that we could get services since there are little/none in our part of the state.

I did feel better when the psychiatrist told me that when she reviewed DS's casefile before she met him she thought to herself, "This is a typical 4 year old. WHY in the world are they here?!" After meeting him she realized that she was very wrong in her initial judgement and gave DH and I some kudos for the progress we've made and the parenting techniques we've used. Ok, small comfort, but we're looking for comfort in any measure right now!

I really want to go to the Bahamas for a month or two. Worn out, don't want to have to fight state adoption subsidy people to get coverage for treatment, don't want to have to relocate just to get some help, in addition to all the rest of the issues we're going to have to think long and hard about how to address. (Like finances and Mommy having a nervous breakdown.) I mean, how discouarging is it when they psychiatrist tells you in VERY plain language that you are going to have to be a raging rhino to get services for your child. Whoo-hoo! Mama rhino on the charge! (after I take a really long bubble bath and cry in my washcloth for awhile)

Interestingly, the psychiatrist said that if it made me feel better I could think of it as fetal alcohol. She said that it didn't make much difference as to the cause -- the result was the same. That the issues one deals with in FASD are the same as those dealt with in RAD. I can get FASD services, but attachment services are kind of thin on the ground. The one center that the team recommended is (deep breath) 8 - 10 hours away. DH has a job and we have 3 children. How are we to get adequate services without going broke or living apart from Dad so he can stay at home and work? (and if we live apart from Dad, how is that going to promote attachment as a family unit?) I'm sure we'll find a way to make it all work, but it's going to be WORK just to get the logistics in place so we can get to the attachment part of the work.

[Howdy]

Since I am still in the homestudy process (and feeling like it will never end!) and don't have any real life to experience, I am checking out all the books I can from the library. There is one I read a couple weeks ago that was very easy to read (alternated between a good story and dry clinical stuff) on working with children with RAD. I will cut and paste the name/author and three of the customer reviews that are on Amazon.com:

Building the Bonds of Attachment: Awakening Love in Deeply Troubled Children
by Daniel A. Hughes

Dan Hughes wrote this book with me in mind. I read this book while fostering a 9 yr old girl who had attachment disorder that, without proper treatment, would have destroyed her ability to function in a normal life. There were ideas and strategies in this book that worked (no matter how strange they sound). Dan Hughes knows what he is talking about. As a professional foster parent, I appreciate the straightforward language used in this book. I would recommend this to any person dealing with an attachment disorder child. It brings a much needed awarness to this overwhelming issue in surrogate parenting.

This is a must have book for anyone dealing with attachment disorder. I have read it over and over and learned something substantial each time. After about 6 months of failed attempts to find a therapist trained to work with my four year old daughter and I, I finally bought this book and dove in. I have been doing therapy with my daughter for about two months as described in the book and now we have a budding new relationship. A reciprocal one. She is beginning to love and trust. This is the missing peice of the puzzle. It makes sense.

Although I was immensely moved by this book, and found the ideas presented thoughtful and compelling, there is a bit of Cinderella-esque fantasy involved. Most certainly Dr. Hughes illustrates the picture and the drama of the unattached child in a clear and concise manner, I would caution parents and would be parents, however, that within the confines of the foster care system, these therapeutic families and incredibly skilled therapists are not usually the norm.It would be my hope that one day every child be afforded the resources available to the fictional Katie Harrison. In the meantime, it does give foster and adoptive parents a roadmap to follow. And although there are cautionary statements throughout the book to indicate that these methods are not always successful, the hope is something to celebrate.Lastly, I hope people recognize that this child is not quite seven when she reaches her therapeutic foster placement and that with each passing year, the task in teaching children how to attach becomes greater. I highly recommend this book as a supplement to a more extensive library on attachment issues.

[Late Bloomer]

Dear Barksum,

My heart goes out to you. I hope you can get the attachment therapy you and your DS need. I admire you for getting that thorough assessment done. I am still writing letters to the powers-that-be to try and get attachment therapy for a child we had to disrupt our placement with, but she is much older -- your son is young enough to make fast progress I'll bet.

You probably know this but there is at least one very successful attachment therapist, Bryan Post, who travels to you home and works with you there. There's a forum of parents who've been clients of his, in case you want to check it out, at http://groups.yahoo.com/group/illloveyouforever/
and his web site is www.bryanpost.com, I think. It's expensive all right, but if you've hung in this far with the little guy and have got a lot of those attachment parenting skills down, I think you're doing great and hope you can get the help you need to continue somehow. Am keeping my fingers crossed for you!

[lucyjoy]

RAD is very treatable in a four year old. There are a few attachment therapists that travel to do intensive attachment therapy, but you'd still need a primary attachment therapist for follow up.

My youngest child has been with me about 18 months. He spent the first 31/2 years in 3 different Romanian orphanges and the next 15 months with a single parent who had two jobs who kept leaving him in "respite" for 4 or 5 weeks at a time while looking for a new family for him. He was heavily medicated on Depakote
(500mg daily), clonodine(which he od'ed on in respite), and buspar. I held him every day and kept him with me all the time he was awake. He's about to finish kindergarten now, is on no meds, has no learning problems and shows very few signs of any remaining attachment issues.

FAS is a lifetime issue. Even though RAD mimics some symptoms,
with time and treatment, most of these kids will succeed.

Untreated RAD can be very serious, but most kids with RAD do respond to treetment and they do heal. I know there have been horror stories(I have one of my own), but these are the rare cases. Your son was diagnosed early, that's a blessing. Find a support group if you can. We found it very helpful.
Visit www.radzebra.org . It's run by a friend of mine and she was running a group on line.

Make sure you give yourself enough breaks and find time to have fun with your healthier children. It helps fill you up so you don't get all drained out.

[louise]

I surely understand the feelings that can go along with receiving the kind of news you and your DH were given today.

And, as usual, I have more questions than platitudes.

As it happens, I attended, just today, a training on diagnosing and recognizing FASD/ARNDD. Much discussion was had regarding the differential diagnosis of FAS/E as opposed to RAD. And how do you then implement interventions and treatment modalities?

So, I would ask, did the doctors evaluating your son consider FAS/E or is their predisposition to look for and diagnose RAD? One thing I have learned, is there seems to be no such thing as a completely objective diagnosis when it comes to mental health issues. It all depends on which particular filter the practitioner happens to be operating from/behind. So, a clinic set up to look for FAS/E is going to find that more than a clinic looking specifically for RAD. A practitioner trained in looking for depression and with a particular interest in that malady will find depression to be the primary diagnosis. And then there are the professionals who don't or won't recognize one diagnosis or another. Everybody has an agenda, so to speak (can you tell I've been round the block a few times on this one??)

So, where does that leave us parents??? To me it feels like swimming in a swamp. Not only do I deal on a daily basis, with my children's immediate needs and complicated issues, I also have to try to figure out just exactly WHAT it is I am trying to wrap my brain around!

Here is the dilemma I see with ANY of the newer diagnoses being bandied around in the last few years regarding our children and others like them. Not only do the professionals not have the whole picture/all the information regarding FASD, RAD, childhood onset bipolar, ADHD or any other number of illnesses new to childhood, we and they tend to grasp onto the newest acronym as soon at it comes to the public's attention. And what a natural reaction that is for us as parents....we want so badly to assist our children with the best possible interventions/medications/treatments available to them and to us. We look for answers and solutions to the very real problems our children face and will continue to face in the future. I am beginning to wonder if there are no answers...yet.

The most apparent difference I see between RAD and FAS/E is that one is supposed to be fixable (RAD) and the other not. This poses a difficulty, mostly in expectation and mindset. Outcomes for a treated RAD child is supposed to be positive, outcomes for an FAS/E child probably more ambiguous. The actual interventions are not that different in terms of parenting and/or intervention IMO as many FAS/E children also have attachment related issues. Where the issue may become difficult is in the possibility of misdiagnosis, only recognized when the child fails to improve according to expectation and because an FASD the child CAN'T improve beyond a particular point. Then we and our children are left dealing with yet more disappointment and feelings of failure.

We have struggled with these issues in a very personal way. At this point in time, Olivia will be evaluated by a genetic specialist at Stanford Hospital in the next few weeks. I am positive that she clearly has FAE along with issues of attachment related to that. Her secondary disabilities are depression and suicidal tendancies and ideation. The reason we are pushing for a definitive medical diagnosis is future ease of service implementation and, to be perfectly honest, leverage in getting the other professionals involved in her care to take the implications of ARNDD more seriously.

To sum up my thoughts, Barki, I hope you and you family find whatever services you think might best meet your son's particular needs. Keep an open mind and don't be sold a bill of goods by ANYBODY, no matter how qualified they believe themselves to be! And if you continue to have questions about your little boy, do not hesitate to seek a second, third or fourth opinion.

BTW, have you looked at the FASD clinic in Seattle? Groundbreaking work being done, cutting edge...just a suggestion.

Fondly,

[Dianna]

Thanks for a great reply Louise. I learned a lot from what you said and am glad that someone has the right words. What is AARD and ideation? We are in the same boat with many diagnosis and just trying to do our best for our daughter. Thanks again, Dianna

[Barksum]

We expected to get a diagnosis of FASD, which is why it was such a facer to get a dx of RAD.

The team that did the evaluation is called ECAT which stands for "Early Childhood Assessment Team" -- I think! LOL Something along those lines, anyway. DS was seen by a developmental pediatrician, speech/lang. specialist, audiologist, occupational therapist, and a psychiatrist. I had requested that he be screened for FASD. When I talked with the psychiatrist she said if it "...makes you feel better, call it fetal alcohol, but the result is the same", that is, brain damage resulting in attachment disorder. To her, whether the brain damage was due to PEA (prenatal ex. to alcohol) or neglect during the first year, what did it matter? She said in her experience foster/adoptive children that she sees fall roughly into two catagories: PTSD and RAD. I asked which was "better"; PTSD or RAD. She threw up her hands and said it didn't matter, they were equally injurious to children, and were serious long-term issues.

I mentioned the hoo-haw in the adoption community over attachment vs. fetal alcohol. She rolled her eyes around and said it was THE SAME THING. Whether biological in nature or environmental, what was the difference in the symptoms and how we treated them? Very little. That kind of threw me. She told me to lay out on paper the FASD symptoms and the RAD symptoms and to see how large the overlap was. Sure, there are some things that are different in application, but I imagine (am I being naive?!) that you could work well with a FASD child by implementing RAD parenting techniques, and that you could work well with a RAD child by implementing FASD parenting techniques. Yes, yes, you NEED to address the core of RAD with intensive and immediate therapy. (We are getting that rolling as I type.) BUT I really think that we will be able to encompass RAD and FASD as we go through treatments and therapies in the coming years.

I asked the psychiatrist if we could work with a fetal alcohol clinic and she said that they would be able to address many of his issues, but to be sure to have his attachment disorder addressed specifically as well. She also said that he had "poor sensory modulation" and "regulatory disorder". Her recommendations were 1) sensory integration therapy, which would address alot of the problematic behaviors, and 2) attachment therapy, which would address the foundational problems of anger and control.

She didn't discuss the learning aspect of things, which I believe the FASD arena will be able to help us with. I imagine (again, am I being naive??) that there will be overlaps in the various therapies and trainings. I'm beginning to think that RAD and FASD are the head and tail of one coin, in a large percentage of the cases. I was SO convinced that DS had/has FASD because he doesn't have the big, glaring issues that come with RAD. I'm still not "convinced" that he doesn't have FASD, but I envision that it will be addressed throughout life for him because I'm becoming so aware of it and reading, researching and aware.

Oh, as to evaluating FAE, the documentation we have it "too sketchy" to give a dx of FAE. I guess we'd need the bio mom to go in with us and say, "I drank 5 oz. of hard liquor every morning before breakfast, and 6 beers each evening for the last trimester" before we'd have adequate documentation, but who knows. DS doesn't have FAS, which we knew, and he does have attachment issues, which we also knew. So, an official dx of RAD is handy because it enables us to go out and get services. In the process of getting services we can gently prompt about FASD and see what we get.

[lucyjoy]

They are two different things. The damaged caused by fetal alcohol leaves the children unable to retain certain items of knowledge. While the symptoms do overlap and many FAS/FAE kids do have RAD, RAD techniques wil not work with fetal alcohol.

Most learning problems RAD kids have are self induced. They're so worried about being in control and so busy manipulated adults to see if they're safe, that the kids can't learn anything. As they heal, the learning problems disappear quickly.

I'm not sure your doctor know much about how RAD is treeted. I've run into a lot of really good doctors that can spot RAD, but don't know what to do after that. My kids were score on the RADQ developed by Liz Randolph (who also did intensives with two of my kids).

Anyway, as your child is treeted for RAD it will be easier to determine if FAS or anything else is adding to the problem.

[louise]

IMO, RAD and FAS/E are not the same thing. I do agree that there are many overlaps and many of the interventions used with one or the other will work with either or disorder/DX.I also believe that attachment issues can be a direct outgrowth of FAS/E and as such BOTH disorders need to be adressed.

Like Lucy said, however, RAD presents as being in some measure under the child's control (and I do agree that RAD can actually cause a measure of brain damage/rewiring) and FAS/E is utterly beyond any of the child's control. That right there is a very basic difference. In the former, one can and should expect some progress with appropriate treatment, full healing even (although this is also in dispute among the professionals in the arena). With the latter, it is, pure and simple, irreversible brain damage. No amount of interventions can repair the brain damge done in utero. With this difference, IMO, there is a vast discrepancy between what parents and children can hope to accomplish.

It frustrates me to hear that the doctors you saw were not at least open to the possibility of discussing the variables involved in these two possibilities. No one is served when the powers that be are in an adversarial position as to what "camp" our children fit into. Just my 2 cents.

Dianna, ARND stands for Alchohol Related Neurological Damage. Suicidal Ideation is just a fancy way of saying thinking and possibly planning suicide.

I honestly think most of the professionals within the adoption community are as clueless as the rest of us....we are ALL looking for answers and solutions to the struggles our children face every single day. The best and most compassionate professionals seem to be those who keep an open mind and acknowledge that, in may ways, we are all fumbling around in the semi darkness when it comes to understanding fully the quagmire of labels, DX, disorders, possibilities that are out there for our children. The future, I hope, will bring more light to these concerns. For now, IMO, we need to learn to live with ambiguity and uncertainty....a difficult challenge for each of us, I suspect.

[Barksum]

I am going to have to continue to work really (REALLY) hard to get anywhere with whatever is going on with my son. (I say "me", "I" and "my", but it is DH and I. Just easier to do "me".)

The one center in Washington state that was recommended by the psychiatrist at the children's hospital is not endorsed by the State of Oregon mental health licensing people. (I forget their official title.) Due to their failure to pass the requirements of the licensing board people in Oregon our son's medical card will not pay for therapies from them.

We plan to probably pursue SI (sensory integration) therapy first, since I think that may easier to get ahold of right away. I'm continuing to look for attachment therapy for DS, but it looks like it may take some fancy footwork to get that in place.

I'm already in touch with a FASD program in our area. I plan to talk with them next week about several things, including what they know about help for children with RAD, particularly in our area. I'm sure that since they deal with children who struggle through fetal alcohol they have to see some attachment problems as well. Even if they don't treat them, they must get info thru the grapevine.

I do recognize that RAD and FASD are two seperate problems. However, they intertwine so much that it seems that it would make sense for someone somewhere to address them both.

[Graham]

as once quoted by Mr. Beavis and Dr. Butthead, "there's too many letters to spell IT - he he."
I think this thread is one of the best we've ever had, and thanks to everyone especially Barksum and Louise, who have been on this Board since its inception. As they both suggest, "beware of the diagnosis de jour." I too have been paying a lot of attention to the thoughts of FAE/FAS advocates, who seem to have recently come out of a closet and, together with some reformed RAD devotees, are trumpeting the misdiagnosing of our children, especially by attachment proponents. In fact, I'm putting together an FAS training series for families as we speak, and once again I'm less sure of the answers than I was even last year. The truth is we know much more than we did twenty, ten, five, two, one year ago, or even last week, and we always will. I'm told that even Freud wondered, reportedly in private, if it wasn't the ultimate arrogance to assert that one understands the human mind. The bottom line is actually simple. Someone has to take care of the children, and if not you guys who actually give a **** and are willing to risk your emotional safety, then who? The letters may not ultimately count for much at all. Thanks for this wonderful thread.
Graham

[Barksum]

I have kind of come full circle in the last 3 weeks. We've had alot (!!!) going on in our family, but even during all the other things we've been juggling I've been working on getting some things in place for DS.

The more I read the DSM IV for RAD, the more I felt we really didn't have a good fit for our son. DS is happily affectionate with us -- if we give him the prompts. He doesn't often give us unsolicited hugs. Occaisionally, but not often. He has a difficult time initiating these actions, but affectionately, happily, ungrudgingly, unstintingly gives us cuddles if we give him the cues that enable him to act. When he is in distress he comes to me for comfort. He misses us when we are gone; is happy when we return. When he has a bad dream he crawls into my bed and wraps his arms around me and wants to cuddle. He has a pet (toy) on whom he lavishes affection. He even shares his special blanket with his toy, and that's a big deal. Is this really the face of RAD? I remain unconvinced. He also displays MANY behaviors that I really wouldn't notice if I didn't know his history, so I'm chalking some up under the "Normal" column.

At this point in time we are in the process of making appts to get SI therapy from an OT, parent training from a FASD program and to continue on with our local child therapist. We feel that this should provide a good network to start with and we can branch out from there if need be.

So no, I'm not taking a diagnosis and accepting it without scrutiny and discussion. Even though this dx was made by a team of highly trained professionals they did only see my child for a fraction of time on one day of his life. I live with him and have followed his progress (or lack of) for over two years. I recognize that there are issues, and we want to address them; but it will help none of us if we are addressing issues that aren't there and not addressing the issues that are there.

[louise]

I am actually relieved to hear that you are investigating further with your little boy.

I know the last few weeks have not been easy, I have been thinking a lot about you and the kids.

[Stormy]

Barki,

I can't imagine how difficult it must be for you to have come so far, in going to these "experts", and not having any real answers.

I am glad I read this thread. I think it may help me with perspective. My 4 year old has been a tremendous challenge. In fact, I often feel it is good that he was a bio child because I would chalk 90% of his issues up to one aspect of a birth trauma or another. I often wonder if maybe I did drink and just forgot it. But he is just a difficult child much of the time and when he isn't, he is the sweetest angel I could ever hope to meet. Your description of your son reminded me of him. Sometimes he just isn't getting it, is being difficult not because of will but because he can't help it. But the world sees him as being defiant and the schools don't have the staff or the time to help him when he is stuck. So I have found myself having to have a diagnosis for him just so others will lay off him. So we are doing the evaluation route. And you remind me that when they are going to look at him for an hour of one day in his life and try to determine the whole of his personality, it may well not be right. We may well have fewer answers after the meetings than before. My biggest fear is that my son is going to be misdiagnosed and then be pigeon holed into one disorder. Sometimes you just want to wrap your arms around your children and tell everyone else to just keep away, don't you?

So sorry your answers haven't been clear. I hope that you are able to find help for you son.

[Graham]

An oldy but goody. Worth reading and another possible perspective. Here's a synopsis.

Graham