Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, September 11, 2016

Parenting Our Children with Reactive Attachment Disorder (RAD)

My friend Meredith Cornish is the parent of many biological and adopted children. She periodically "thinks out loud" as she processes things that are happening in their journey as a family together. Today she has written the description I have thought so many times but could not ever put into words. What Meredith has to say is brilliant, and needs to be read by EVERY.SINGLE.PERSON who works with or loves our children. I mean it. Every one! Maybe, just maybe, some will stop thinking all we do is yell at our kids. Maybe some will stop thinking we're so incredibly strict and our kids are just never allowed to be kids. What Meredith has to say explains why we prefer to have family get togethers in our own home, and why bringing our kids into the homes of others is nothing less than torture for all of us (our kids and us!) Why in someone else's house we can't let our guard down for even an instant and we're always on edge. Why when people come to our house, even familiar people, our kids start testing every limit (moreso than a typical child will.) And why we have to become MORE strict when someone is here!! All the whys...there are just so many whys!!!! So, I will just copy and paste all of what Meredith had to say here. Please read it. Please stop talking about us behind our backs about how "Mean" we are with our kids. How we're "So strict" with the kids, etc. What you are saying is hurtful, and yes it does get back to us. You have no idea how difficult this job is, and how isolating it is.

"Parenting isn’t easy on any front, and parenting a child with RAD can feel like a series of tactical moves that are executed, challenged, held to, reevaluated, intentionally changed, and continuously re-aiming at a target that is in motion and has no idea that it is in motion. (Yes, I realize this can apply on some level to most kids!)
Children with RAD often are caught in the current between opening up enough to feel happy and in control and closing off enough to not be hurt. There are barriers that shoot up at a moment’s notice and others that are overwhelmingly out of bounds the next moment. It is often a challenge to them to test every directive given to them and see how much of it they can take under control and manipulate it to what they see as their best outcome without any regard for anything outside of their own circumstances. “Put your shoes on” may be accomplished but challenged by putting them on the wrong feet. “Go to the bathroom” is done by urinating on the bathroom floor, or going into the restroom and not toileting, or by taking off a random piece of clothing and putting it back on inside out, or throwing it in the garbage, or not ever returning from the bathroom and just camping out there until someone comes and gives them attention by looking for them. Does any of this sound familiar?"
**Some of our children's staff are reading this, and specific behavioral situations are coming to mind.**
Children with intellectual disabilities and RAD often appear to be socially much ‘higher functioning’ (for lack of a better term) and intellectually ‘lower functioning’, because of their innate desire to adapt to blend in when they desire and to stand out as much as possible at other times. When something is asked of them, then playing ‘dumb’ is a skill. Intentionally not following directions to control a situation is often done through a blank look and feigned dependence.
In our house we refer to this as "learned dependance". Some of our kids have moved past this, and some are in the thick of it now. All of our kids are very capable learners, but some have pulled the wool over the eyes of school staff  members. It is not your fault, they are just trying to have control over a situation. And, when you *think* they've learned a new skill and they realize you know, they will suddenly self-sabatoge it and intentional do that skill incorrectly. (shoes on the wrong feet, not be able to match colors, etc.) You can test a self sabotage situation. Here's an example: Little A (all of our kids start with A. ;-) ) is suddenly unable to match colors. You were sure he had this down, but he noticed your excitement. The attention and excitement causes the wiring in his brain to zing a bit. You are "proud" and that comes with attachment, and he is afraid of attachment. He doesn't know what to do with that "proud" feeling and so he destroys it. Shoots it down. Suddenly he can no longer match colors. He is back to being in control of the environment and the emotions shown around him. If you remove your excitement, and just say "when you match all the colors you get x (probably a food reward) suddenly he can match colors again. Then you know, it was all about control. 
Whenever I wonder how we’re doing with this whole parenting thing, I have to remind myself that there’s a battle over the heart and soul of my children with RAD, and that the battle began well before our kids came to our home. The two children I’m referencing here each spent 6 and 8 years of their lives without permanence. They had rotational caregivers, many of whom were not kind to them. The people who had any type of long term relationships with them are the ones that gave discipline-- often harshly-- and who gave them cold baths and stern words to get large groups of intellectually disabled people directions. Those people who came in and out of their lives for a few hours or days at a time-- missionary visitors and other humanitarian volunteers-- are the ones who gave them candies and hugs and kisses, who snuggled them and pushed them on swings, and who whispered and sang and were kind and sweet. The strangers in their lives before their adoptions were the ones they had fun with and who had no boundaries when they were around. The caregivers who were there on a semi-consistent basis were the ones who weren’t to be trusted and who weren’t kind. Then there was the issue of the caregivers leaving, or the child transferring institutions. Any type of bonds that were formed had been broken repeatedly. When a child is adopted out of an orphanage situation, their brain is wired not to trust the permanent caregivers, and women especially since that’s who a majority of their daily interaction was with. Instead, the brain is wired to accept and yearn for strangers and their affection and attention. There was less risk of ‘love and loss’ with strangers, and the strangers weren’t as likely to have any reason to have to establish any boundaries. 
As a parent of children with RAD, we’ve had to re-wire our parenting to recognize this hurt, traumatic past, and the way that our children are thinking that’s different than children who were born to us or given excellent care by long term loving individuals before coming to us (though we recognize that any child who has a need for adoption has experienced some level of trauma). 
Our kids with RAD often have two modes. I call them “home” mode, and “visitor” mode. Home mode happens when there is an established adult authority figure that they know they must obey. This adult cannot be established from a ‘transfer of authority’, but must prove themselves. There’s got to be a secure way of giving consequences that are meaningful for this adult to establish control of the situation, and it is VERY important that the adult establish themselves as the authority figure or ‘visitor’ mode will kick in. 
In home mode our kids listen, are well behaved, and though there are specific behaviors that tantrum, they will generally follow a well-established routine. Home mode is also where most of the testing comes out and most of the obstinance, because there’s the conflict with not wanting to be able to attach to a caregiver because of past hurts. Home mode sees the worst of the behaviors that show anger, resentment, and defiance. These behaviors usually will be aimed at the primary caregiver, often the mom of the household (remember the women caregivers at the orphanage?). These tough behaviors are usually saved for AT HOME, or in a very familiar area with familiar adults, because of the desire for control. Kids with RAD often are very obedient around strangers when under the care of an established adult authority figure.
Home mode doesn’t mean a child is “at home,” it simply means that the child recognizes that the rules, authority, and routines that have been well established within their home apply to the situation. Home mode could be with the parents in the home, with the parents in a different environment, or with other trusted and established authority figures in the home or another environment such as school or church. In "home mode" children feel safe because they know the established boundaries and consequences.
Conversely, if a child is with a “visitor” or an adult figure who has not well established themselves with meaningful consequences which cause a child to recognize them as an authority figure, then the child will enter ‘visitor’ mode. Visitor mode is how the child would act when they go off with a humanitarian visitor or missionary that doesn’t have any established authority and who has no means (and historically a likelihood of no desire) of giving any type of meaningful consequence for outrageous behaviors. A child may go into all-out behavioral overload when they feel released to have zero boundaries. They also feel very unsafe in this situation because there’s no assurance that this adult won’t attempt to serve consequences and the uncertainty of what the consequences may be if they are given out. Because of the feeling of insecurity, there’s a hightened sense of protecting at the same time that they are going wild, and even a slight maneuver that feels like it could be someone establishing authority will be severely reacted to. The reaction could be rage, mania, self harm, harm of others, or anything in between. There’s a high occurrence of repeated behaviors that give the child feedback that they enjoy and have figured out that they can get away with such as playing in a toilet, flipping light switches, running away, screaming, tearing at projects being done, throwing, stealing from others, undressing, and the list goes on… These behaviors are probably not seen very often in “home” mode unless the child feels a sense of independence that they’re not sure what to do with (in other words, mom and child get ‘comfortable’ and mom lets down her guard… then these may come along at home, but probably not as regularly!). 
We’ve had to learn that if we’re not within our home or another established location and we put on a ‘sweet tone’ and give a direction, our children with RAD have the high possibility of flipping to “visitor” mode, and they’re unable to listen or obey. As soon as we give in to a behavior that’s asking for something in an inappropriate way, they may turn back to “visitor” mode. If we let a rule that was established as a result of some of their ‘gateway behaviors’ go because we don’t want to hurt the feelings of someone who doesn’t know that this behavior has significant consequences to the child’s mind and then behavior, then we have to quickly re-establish that the rules haven’t changed, we are still the same parents, and the rules all still apply.
 For instance, our son wants to be held by every stranger, but if someone picks him up, he will begin clawing at them and pulling at their clothes and grabbing their face. We have to determine that we will NOT allow him to climb people, because that is a gateway behavior that leads into him losing control and doing all these other difficult behaviors and often melting down in a short time.
 In the same manner, when someone who is truly a ‘visitor’ in our children with RAD’s lives (a teacher, therapist, babysitter, even family member that doesn’t have an established authority with the child) tries to take on an authority role, it will take a significant amount of intentional time with consequences that are meaningful to that child in order for the child to be able to determine that that adult is someone who they can trust and who they must obey the rules for. Additionally, the rules and ‘gateway behaviors’ that have been established with the parents have to continue to be effective for the additional caregivers with the same (or an acceptably similar and meaningful) consequence. 
When our children go to school, the school staff are "visitors" in their world. Remember they have never been in a school setting before, and some have changed settings since joining our family. Keep their world SMALL for quite some time. Remember for a long time when Abel started at his current school staff who did not work with him were instructed to NOT interact with him? No eye contact, nothing. This is exactly what Amos and Audrey need now. They need to have NO visitors into their world until they are secure with their current staff and understand those staff are not "visitors" but have a consistent set of rules and boundaries. Remember do not allow even one behavior that you do not want repeated. If you allow it even once, you have damaged your ability to establish your authority in the school setting. You will likely never be able to take them on a community outing if you do not establish yourselves as the authority figure in the school setting. 
This write up was just a brain dump for me, a reminder that my kids have trauma that has shaped the ways that their brains work, that their emotions work, that their thoughts process, and that their love is expressed. It’s also a way I can see how much we’ve come in the 2-6 years that our children have been home. Progress is amazing to see in hindsight. Baby steps are seen all along the way.  
We still have a long way to go, but the journey is one for the heart and soul, which means that our biggest way to combat the frustration and difficulty of parenting children with RAD is PRAYER. We can’t change the way our children’s brains are wired, but we can strive to understand them and to have the patience to deal with them, and we can spend time in PRAYER because GOD CAN.  
If you do not have experience with parenting a child with RAD, please remember that children’s disabilities aren’t always visible, and RAD isn’t something that many people would know or understand if they’ve not had first hand experience with it. Sometimes I want to carry a sandwich board that I can put on that says “I’m not being mean, I’m being consistent because my kid grew up in an orphanage and if I’m not consistent then there’s no hope of us having a successful life together, so please cut me some slack! This IS how I show I love them, I promise I’m not being mean!” But really, then I’d need another that says “sorry, can’t stop and tell you our life story right now,” “nope, not all the same daddy- EIGHT daddies (and 8 mommies too!),” and “I don’t take our play group grocery shopping.” :) 
Got to keep laughing. Got to keep smiling. Got to keep praying. Then we’ll make it, day by day! God is good, even in the hard stuff!
The small print: I’m not a doctor, psychiatrist, or otherwise have any credentials to write this post except that I’m in the ‘trenches’ so to speak, as my husband and I parent two children with attachment disorders (one formally diagnosed with RAD and the other with similar challenges and attachment issues) and nine more kids. This is written from the perspective of our family with the knowledge and collaborative efforts of many other parents of children with attachment challenges or diagnosed disorders. That said, here we go...
A huge THANK YOU to Meredith for putting her thoughts to print and sharing it with the rest of us!!!

1 comment:

Unknown said...

And this shows one reason why orphanage "voluntourism" is such a very, very bad idea.