On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Wednesday, May 26, 2010

Too many variables to draw a conclusion

All I did was call the IFI supervisor, saying "I was hoping you might help us trouble shoot some issues we're having with our IFI team."

The supervisor said, "Never mind, we're switching you to my team. Sissy's been rolled to GA medicaid."

News to me but OK then!

The last two weeks has been a blur. Meeting the new team, reintroducing ourselves and Sissy's issues and phone calls. Oh the phone calls. As the chips settle, we are getting 10 hours in-home therapy provided by three new team members, all of which have RAD experience. Our Family therapist is working on social skills with the children in one session and attachment with me in the other. The individual therapist is reviewing DBT skills and the third member is a life coach, taking Sissy out into the environment to help her navigate more appropriately. The CBAY waiver (community based alternatives for youth, a federal stimulus act grant-funded program specifically created to help kids transitioning out of RTC) is providing wrap around services which includes paying for a Family Y membership so Sissy can access the day camp program and adaptive swimming classes, respite care, neurofeedback, paying the RAD therapist and finally, assistance in payment for the IFI services. (even though she's medicaid now, in July, GA will cut the allowable hours for IFI by 50% and the CBAY waiver will pick up the some of the slack.)

Most kids are in IFI for three to six months. Sissy will get the full six months. Typically clients are on the waiver for a year but if Sissy still needs help, we can get an extension.

Do I think all of this stuff is working?


Here's the thing. I think if I took the RADQ right now, Sissy would probably score 50% better than she did last November (she scored all but 2 at that time.) And I haven't had to call the crisis team to deescalate in four weeks. She's had volatile moments and limits-testing moments including setting off her alarm, but I was able to manage it all. (Don't think I'm a fool though, I made sure the IFI team knew about it afterward.) But back to the question, do I think all of the interventions are helping her? I can't say.

Now I'm going to go geek on you, as is my right as a science teacher on indefinite leave. An experiment must have only one manipulated variable by which to test the hypothesis and to draw conclusions upon. If more than one variable is changed, you can not determine which variable affected the end result. The experiment and any analysis and potential conclusions as it pertains to the original hypothesis is null and void. Sissy's experiment has a second variable. Meds.

A month ago, the pdoc increased her anti-psychotic and added a new ADHD med. Her violent rages stopped. Immediately. She still can't sleep, still manipulates and annoys us deliberately, still tries the waters to make sure her family isn't going to turn into a cesspool of writhing, electrified eels and generally is not "better" per se but the violence? Gone. The crisis calls to IFI? Non-existent. It would be wonderful to say all the therapy has helped, that she's cautiously attaching but I can't say it isn't just the meds.

We are about to discover the proof in the pudding. Sissy has had tremors from the meds and I don't know if it's the increased anti-psychotic or the ADHD med. If it's the anti-psychotic, on Friday, the pdoc is going to take it back down to the original dose. If her rages immediately reappear then we'll know, won't we?

Yes. I am dumbfounded that some how by an act of God we have gotten help finally. I really wish I knew how we landed on the door step of OZ so I could tell you to just follow our yellow brick road but I think Glenda the Good Witch waved her magic wand and that's how we got here. What's more, we'll be getting some for Aspie Boy too since we did an intake with the IFI team just this morning to address HIS issues. But still I'm thinking that the meds have been the true reason for the emerging peace in our home. Four weeks ago I would have still told you were were hitting all but 2 of the RADQ statements. In addition, it seems only I am soaking up the therapeutic techniques so that when Sissy has a crisis moment, I can talk her through it better and therefore we aren't escalating to a crisis situation that requires outside intervention. Sissy's not actually internalizing these things to use of her own recognizance, she really just likes getting all the attention.

The real question I find myself pondering is at what point is RADs a psychoses that requires medication as opposed to a diagnoseable syndrome that can be retrained and reconditioned through the often odd RAD therapy techniques? In other words, does trauma irrevocably alter brain CHEMISTRY and PHYSIOLOGY, not just cognitive reasoning and psychology? Does trauma induced RAD actually become a MEDICAL condition that would show altered brain functioning in an MRI? Have psychology and psychiatry researchers ever performed a functional, waking MRI in which the RAD is asked triggering questions to see what happens in the various regions of the brain?

Indulge me for a minute. If you consider another severe mental health condition like schizophrenia in which the individual displays odd, challenging, defiant and sometimes violent behaviors toward himself or toward others, the first question is usually, what is the medication treatment plan? Not, as it is more likely to be with RADs, what is the therapy plan? On fMRIs, schizophrenia is very distinct, often including smaller than average brain regions and in research, even diminished neurotransmitter receptors in the hippocampus. Once the sufferer of severe mental health conditions is adequately treated with medications so that his symptoms are minimized to manageable levels, he then approaches his therapy plan to help problem solve and trouble shoot the challenging circumstances that are specific to the patient.

With RADs, at least to me and in our situation, the opposite occurred. Sure, we tried meds for Sissy but all of them addressed her ADHD specifically and then over time, adding to address her bipolar. But with the RADs, straight from the start at diagnosis when she was only 18 months old, the treatment was only therapeutic. In fact, the psychologist and therapist only ever talked about the therapy plans to treat the RADs. It wasn't until RTC that the med plan became aggressive enough to batten down the hatches on Sissy's mounting mental health needs. Six months later, she's on a cocktail that has ceased her rage, dulled her mood swings and her yen to exacerbate and made it possible for us to begin building a bridge toward acceptance and appropriate affection.

For four years, I have built friendships with amazing families that have kids impaired with lots of different mental, emotional, genetic and physical impairments. They are all different but one constant has held true, when they are escalating, they have required a med adjustment.

Sissy will always be "off norm" and I accept that. It would be folly if I didn't. But maybe I'm also beginning to accept that her RADs is just one component to her conglomeration of mental health needs. yes, I know. RADs mimics everything but Sissy has needs akin to her birthmom's and BM never had RADs. Likewise, I think my acceptance of Sissy's mental health needs has made it easier for ME to attach to her regardless of HER desire, an unconditional love that has inadvertently become the doorway of opportunity for her to feel safe in considering to love me back. (See, one more variable skewing the results in our science experiment)

Finally, so many of our adopted RAD and alternatively challenged kids were available for adoption because their parents were alternatively challenged and thus ill-equipped to parent a child. I've said it many times, if you have a special needs child, quite often you have a special needs parent. Think about it. Let's say the parent was an alcoholic that abused a child when drunk. WHY was the parent an alcoholic? Was their bipolar disorder unmedicated or undiagnosed and the alcohol became the only way the parent could "help" themselves through his own needs? Was the parent abused as a child and never recovered? I know many parents of Asperger's and Autistic children that are a little quirky themselves and it makes me wonder maybe the MOM's on the spectrum but never diagnosed? And if you ask anyone that's been in mental health professions for any length of time, they'll admit to it. Individuals with unaddressed mental health needs are more likely to be attracted to other adults with unaddressed mental health needs so that they have children that have unaddressed mental health needs, children that are traumatized inadvertently BECAUSE of the parents' unaddressed mental health needs. It's a horrible vicious cycle that I suspect alters brain chemistry as opposed to just individuals perpetually modeling bad behaviors that psychologists say can be retrained by cognitive and dilectical behavior techniques.

Anyway, that's food for thought, eh? I'd love to hear your two cents.


Cyndi said...

You said it all here. I have wondered these same things many times. The answer in the end may be to live with our kids and their issues and then maybe we need a miracle and some how the cycle ends for these people who should never become parents in the first place. Don`t get me wrong I love my kids issues and all but I often think about how they should not have to be dealing with all of this stuff.

FosterAbba said...

I think the cycle you are describing is very plausible. Knowing what I know about my child's birth mother, I suspect that some of her issues are exactly why her children have issues.

But like you say, there are so many variables involved, it's hard to know what is the fundamental cause of my child's behavioral problems.

And really, with mental health problems, knowing the cause isn't always sufficient to find a solution.

GB's Mom said...

My 2 cents-
I read an article in a journal that said the trauma that produces Rad also physically changes the child's brain, which is why it takes so much work and so much time to effectively treat these kids. In my experience (which is JUST my experience) kids adopted now- as opposed to pre-1976, usually have both biological parents with significant mental health problems. The kids themselves frequently have co-morbid problems. It is not easy to identify what is working. But I agree that if you cut back the Risperdal and the rages return, you will have learned something. The question then becomes, will IFI learn something? {{{Hugs}}}

J. said...

Cyndi and GB Mom's said it all, yep, that's all I have to say about that.

Corey said...

I think there is sooo much that we don't know about RAD.. and I think that 20 years from now, we will find out IT'S ABOUT THE BRAIN!

I have clinical depression, and I eat healthy foods and exercise and sleep right, and yet WITHOUT MEDS, I cannot function. If I did not have the meds that flip my brain into "normal".. I could do ALL of that other stuff that I want, (because, believe me, I have TRIED) I could not make it. And I think, realistically, it is like that for our kids. I think I can try to behavior mod my kid all I want to.. but I cannot behavior mod her brain into functionality! And I do not know what meds are going to do that for her (or if they even exist yet.)

Essie the Accidental Mommy said...

These are things I know:
Trauma and early neglect does change the size of the brain in a child. (Dr Bruce Perry MRI's)
You are right on with your theory on bipolar. There is a theory that 2 bipolar adults, frequently attracted to each other, will have a baby where the dna of bipolar has become concentrated in the genes. (The Bipolar Child)
(Incidentally that is also a popular theory in Autism research).
Current research has shown that brain chemistry is absolutely altered by neglect and trauma in children and that can be permenant. Oxytocin can be limited or even extinquished. (research currently from The Waismen Center, and This Emotional Life)
Last thing, new research is showing definitive changes the brains of adult women with long term depression. This may or may not apply to children (some part of This Emotional Life)

Don't you threaten to geek me out young lady, I will geek right back at you!

marythemom said...

RAD most definitely causes permanent brain damage. Think of the experiments done with kittens. They sewed shut the eyes of healthy newborn kittens so that when their eyes would normally have opened they were unable to do so. Later they allowed the kitten's perfectly healthy eyes to open and the kittens were... blind. The part of the brain that they needed to have developed for their brain to understand the input received from the eyes never developed. The neurotransmitters in our kids' brains don't make all the connections needed either - so my kid doesn't understand cause and effect or object permanence.

That's not to say that they cannot be taught, but this is the brain working AROUND the permanent brain damage. It's like learning to use a prosthetic arm - you don't use the same muscles or pathways, but it's possible to approximate the original arm movements... mostly. Also, like learning a foreign language, the younger you are the easier it is to learn new things (like love, trust, object permanence). It is not impossible. (Katharine Leslie's book "When a Stranger Calls You Mom" and her lectures are my biggest source for this).

I believe meds are not healing or correcting the child's brain, all they are doing is calming down all the outside input so that the brain can focus on building new pathways. Another example (can you tell I love examples), if you are in the middle of a warzone, are you going to be able to sit down and study your math homework? NO of course not. You are totally focused on survival.

I'm bipolar too, but luckily I CAN go without meds if I'm taking care of myself and not under a lot of stress. Add in stress though and meds are not optional (needless to say I'm on meds right now!). So do kids with RAD and PTSD need meds even though meds cannot cure/fix them? I believe so. Otherwise you are asking them to try to focus on healing while still having to deal with the war zone.

As to comorbidity. Heck yea! My son has a giant sign on his forehead that says, "If you are cute and have issues, let's date!" I believe a large part of this is because only girls with the low self-esteem that comes from having major issues will tolerate his issues. The less issues, the shorter the time period they date, and it only takes one "date" to make a baby (and my kids' biomom has 5 - all with different dads).

Biomom is diagnosed with borderline personality disorder, bipolar disorder, ADD, has gotten treated for cocaine and meth addiction, aged out of foster care, and apparently prefers abusive men with issues. The biodads have major issues as well.

I could write more, but I think I'll turn this into a post instead!

Mary in TX

Jules said...

There was a study done recently that suggests a link between the 5-HTTLPR promoter polymorphism of the serotonin transporter gene and adult unresolved attachment. Of course it challenges the current thinking by demonstrating significant genetic influences on a phenomenon previously thought to be largely environmentally driven.

Jules said...

Kind of surprised no one is interested in my comment...

Jennie said...

from an anonymous reader that asked me to share:
"There was a period in time when medications helped me greatly and I was never considered a candidate for going off meds, however a medical issue forced me into it. Strangely, as I came off the medication, I had to relearn my body's and emotion's signals, and was able to make a connection that I had failed to do while on my cocktail of much needed meds.

I was able to learn that my actions and thoughts had a direct impact on the way I felt. I was able to use the years worth of soothing tools that I had been taught, tools that previously had no impact, because of the imposed regulation of the medication.

As a result, I found myself med-free and mentally healthier than I had ever been. There is no doubt that the meds helped through a difficult period in my life. Once I was out of crisis and in a place to listen, they also probably hindered my growth.

Too many variables for anyone to know. The only thing that is clear, is that the brain is adaptable and can change/grow, to what extent though, is most likely unknown."