I was cleaning today and came across this piece of paper that was sticking out from under the living room sofa. It made me laugh as its,well, 1) it's funny, and 2) I was just thinking about Penelope's progress in regards to fantasy and reality. I have been thinking a lot about the challenges we've had to encounter trying to get effective treatment.
I just finished attending the Childrens Defense Fund (CDF) Conference in Cincinnati. Even though it was for work, I was so grateful to get to go to this conference. It was mindblowing. I will talk about the Conference in a different post in more detail but for this topic I am bringing it up now because one of the many issues covered at the conference is, what I have heard called "Early Childhood Education." I have seen it addressed from several different perspectives. I've even heard, to my joy, people use the word "attachment." Frustrating for me, as a mother of a child with Reactive Attachment Disorder, I still never see any real importance placed on developing mental health treatment strategies. The focus is always around prevention/intervention.
I'm not disgarding the importance of it by any stretch because I agree investing in early childhood education and development has a large ROI, but what about us parents who need access to effective treatment. We are past the prevention standpoint. Trauma happened. Trauma experienced at different periods of our life will effect us differently. Even though RAD is caused by trauma, you can't just uniformily apply a treatment that works for PTSD. And my experience has been that is what is the go-to strategy. It didn't work. BOY did it not work. Besides not working, it made things worse. It stoked the fire, so to speak. I also think that those treatment facilitators also have seen it not work. It explains why so many of us are told from the onset that there isn't much anyone can do, and "the child will end up in residential treatment" and sometimes because of this lack of effective community based treatment, families have had to hand over custody of there child in order for the child to get treatment that may or may not be helpful.
I do want to say that I am no expert on the value of residential treatment to a child with RAD. I've heard of short term successes at best. I think there are too many variables, the type/severity of RAD, the facility's environment and management practices, and the staff's knowledge and treatment methods. I've heard of facilities that insist that families are included in treatment plan development and the treatment process (which I would think should be standard in all) but I've also heard stories where the family is alienated. I've heard stories were the child "got better" in regards to their behavior, but shortly after they returned home the child reverted back to their old behaviors. I know that there are special facilities that focus on RAD but I have not heard any stories about their successes.
My point is that I feel there is a lopsided approach to reactive attachment disorder, in it's spectrum of severity, that leaves such a huge gap that so many children, and their families fall through. Actually, I'd call it a cliff. Once the child is past a certain age, you are on your own. If the child/family didn't get the preventative/interventative help needed, it's too bad and too late. We will try again with the next one. This leaves many families desperate to help these children.
This is an issue beyond the child welfare system. Actually, let me back up and say that the approach I'm referring to isn't even about reactive attachment disorder, as I've not heard one person use that term when discussing the benefits of investing in early childhood education and development. Everything I hear skirts around it. The word attachment is used more and more but no one wants to label. I get the aprehension. But what you are talking about IS reactive attachment disorder, in some degree of severity.
This approach focuses on early childhood education and development but then only addresses treament at an early intervention stage, teaching parents parenting skills that promote healthy development. But this leaves out the children past that stage of development where the effects are there. This approach leaves out all the work that can be done on aggressively identifying the effects of trauma on the developing brain, identifying effective treatments beyond behavioral, educating the schools, the insurance carriers, medical professionals, and developing educational programs to produce specialists in this field to make treatment accessable to families in their communities. And I know some of this is already being done. Obviously all this costs money. And the ROI is higher when you invest in ECE. Okay, but someone has to also invest in these older children.
We have been fortunate enough to find therapists who work strickly with children diagnosed with reactive attachment disorder. They used treatment they call attachment therapy. If you do a google search on attachment therapy, you will see how controversial it is. I have seen on youtube and read articles about attachment therapy from years ago that were shocking, yes. But it's not what we've experienced. I was reading a website that declared themselves advocates for children in theapy but it's all about how they consider attachment therapy and parenting abusive. Reading through it, most of it is refers to those practices from the past. It's apparent they have no idea what they are talking about. Actually, it was rather upsetting to read in that it actually blames the parents for the cause of the voilence the child exhibits. That it should be considered that the reason children with RAD are well behaved outside the home is because their parents cause them to behave badly in the home! What a crock of poo. With all that anti-AT, then where do they tell you to go for treatment? They have a list of "evidenced-based treatment interventions". Interventions being the key word. I looked up each one. They are prevention if not intervention treatments. Nothing for the older child. I know from talking to our attachment therapist that there is more supportive research out there as they continued to strive for that trophy title "evidence-based." It's costly to do the research, she said. Obviously it would be ideal to have AT awarded with the term "evidence-based." But the term ends up meaning little to parents who have sought out evidenced-based treatment and it horribly not work. Then you seek out treatments with emperical evidence. That's what attracted me to AT. When I asked the nationally recognized children's hospital who diagnosed Penelope with RAD and had been treating her, with their own admission, unsuccessfully about AT, I was told "We don't do that here.." Of course, when I shared with Penelope's psychiatrist, who we no longer need!, that she was in AT he was none too thrilled.
Even the powers to be where we get AT have a hard time with it. I know from working with their office for the last 4 years, it's hard to get buy-in. Even for our therapist, internally. When we started there, it was a team of two that worked as attachment therapists. They did 2 week intensives, one at a time with a one week break to recooperate. They had a wait-list. The lead therapist left shortly after our two year mark, for reasons that can be classified as lack of buy-in by the powers to be. For me, it was rather devistating. As the lead therapist, she was the one who I met with while Penelope worked with the other therapist doing neurofeedback. So the lead therapist was the one I had a stronger relationship with and leaned on the most during those really hard times. When you feel like you've been let down by so many mental professionals in the past and you finally find the right ones, and then they leave, especially during a really horrific period? Well, you develop your own abandonment issues. The one therapist that remains was offered the manager position but declined for self-preservation reasons. I believe I've grown even more attached to her than the prior lead therapist. But I can tell the burden of being the only attachment therapist, the emotional vacumn working with these children can be, and the internal politics that must still be going on has taken it's toll. I'm sure it didn't help when I told her about the conversation I had with one of those powers to be in her office who decided they wanted to bill the therapy seperate from the neuro work which essentially doubled my co-pay. I explained I couldn't afford it but Penelope needed it, and she in a round about way explained that Penelope really didn't need neuro because it doesn't really work... After the lead therapist left, instead of replacing the position, they tried training one of the other therapists in the office to assist when doing intensives but it didn't work out. So now they don't have intensives anymore.
I just think, what a disservice for these children and families. We drive over an hour to and from therapy because of the lack of services available. I just can't imagine, after everything that I've learned that there just isn't a big enough demand in the theory of supply and demand.
Okay, if you've actually read this far, I will tell you about the picture. So, this letter wraps up 3 of Penelope's favorite things/dreams. 1) She wants to go to school to become a Forensic Anthropologist like Bones 2) She also wants this university to be based in South Korea because she is a huge K-Pop and all things asian pop culture fan, and eventually wants to live there and marry a hot Korean K-Pop idol (star) and 3) She read a YA romantic comedy with hot vampires in it and the lead female character is Raven Blackwar. She loves it so much that she somehow was able to get her teachers and some of the students to call her Raven last year. The XD at the bottom is an emoticon, if you didn't recognize it. It seems in southeast asia, the emoticons are more elaborate than the ones I've learned. The funniest part, in my opinion, is the attempt at the Korean alphabet or Hangul. If you were to ask, she would tell you she knows both Japanese and Korean languages, spoken and written. I just give her the one raised eye brow expression "Oh really?" and she looks away.
