Therapy Room Project

When we were looking for a new house, one of the things on our list of "must haves"was space for a therapy room. In our old house we had that space in the basement, but it was tough to find such a space in the houses we were looking at, especially since it also had to have a kitchen that didn't need remodeling. LOL 

Then we found THIS house.  It originally had a two-car garage, but at some point that was made into a workshop, with an additional 3-car garage added to the front. This is what it looked like when we first looked at the house back in March.

When we first saw it, my mind said "Therapy room!" 

Dean's mind said, "Woodshop!"

"Therapy room!"

"Wood shop!"

As summer moved along, thoughts of winter started moving through Dean's head and he remembered what a sanity-saver this space can be for us. First, we had to finish the odd area between the house, which became a mudroom. (I'll do a different post on that space.) Then we were interrupted by the Great Toilet Crime of 2016, which involved a toilet, lots of water, LOTS of damage, and a LOT of stress. It has been a two-month process to get the repairs done, including vacating the house for several days at a time because it just wasn't safe for the kids at some points. In fact, we'll have to vacate one more time while the wood floors are repaired. 

When we were a bit overwhelmed when it was time to start the therapy room. In the realestate pictures it was so nice and organized, then we moved in! LOL Somehow there were a lot of boxes marked "shop", that happened to be full of tools and shop-like things. Ummm sorry honey!

Dean was determined, and got it all cleaned out!

Finally, with lots of late nights of hard work and painting it all came together! 

We have a few pieces left to add, including some shelving to store smaller therapy items and changing the fluorescent lights some recessed LED lights. Last night we had a large family gathering. All the kids LOVED this space!! It was absolutely perfect. 

Do you know what October is?

Another 12

My dearest Audrey,

Today you are 12.  Two and a half years ago you arrived on US soil a scared, traumatized, anxiety filled little girl. You couldn't do anything for yourself yet, but you were ready to take on the world. 

Audrey you will always hold a special place in my heart. It was you who saved me, forcing me to find out about cancer before it could progress any further. Its a good thing you're cute though, because man you can sure get into mischief! 

Now you do so much for yourself. Even when there is something a bit beyond your skill level you're still more than willing to give it a shot. You're so very close to swimming on your own, and I can't wait until next year to see what you can do! 

I have to tell you something. Your birth mother, she loved you very much. So did your sisters and, most specially your aunt. They are thrilled to see how far you've come. How much you've grown and changed. I know today their hearts are heavy missing you. 

There are people all over the world who love you to the moon and back, Audrey! 

12

12

This guy...12 years old today. His second birthday with our family. When he got up this morning, as he was coming up the stairs Dean and I started singing "Happy Birthday". He got the BIGGEST grin on his face. "Happy happy" he signed. "Cake. Birthday!"

Oh this boy! He has changed so much since finding his way into our family. He has gotten taller, and heavier. (size 5/6 bands now, and 6/7 shirts) Dressing himself, trying really hard to brush his own teeth, feeding himself all his meals and chewing all his food. FINALLY drinking from an open cup with very little spillage.

His favorite activities are jumping on the trampoline with Audrey, riding in the big van, or anything with water. Right at the end of summer he was just getting brave enough to get into our pool and stand on his own two feet, bouncing his way along the side. I hope next spring it doesn't take  long for him to start again.

Happy Happy Birthday Amos! We sure do love you!

12

The Lasting Effects of Neglect

This is circulating around social media today. What happens when an infant is severely neglected, goes hungry, and then grows up?

 This happens. I see so many things, with three of our kids in particular. My hearts still breaks for them.

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!!!

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!! Why we ask people to STOP bringing food every time they come. 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 helplessness". 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!!!

Some good news with a little drama

Angela pretending to watch tv, but really trying to think of more things to talk about to keep the  male nurse in her room longer.

Well, yesterday was pretty interesting. Apparently there was an option #4 that nobody had taken into consideration!

Angela was in the cath lab MUCH longer than she was the last time she had a hepatic venogram done. At 3 1/2 hrs I was starting to get worried. What could possibly be wrong? As it turned out, her doctor had been called to an emergency case immediately after Angela's, and somehow nobody came to talk to me until Angela was already awake and talking the nurses ears off.

So here's what we found out:

When Angela's last ultrasound was done in July, her liver looked awesome, and the bypass that had been placed was open and functioning well, with good blood flow. Based on that the doctor stopped Angela's blood thinners (yay! No more shots!) in preparation for yesterday's procedure. Well, when the doctor tried to get the catheter into that shunt, the access was too small, plus there was a sharp angle she couldn't get the catheter around. "The access was too small" because it is starting to close, ON ITS OWN!!!! This means the blood flow and pressure in Angela's liver  has normalized so its no longer needing to force blood through the shunt!!! This is pretty amazing, actually!!! Angela's body is trying its best to normalize the liver vascular system. Also, this doctor couldn't get over the difference in the size of Angela's liver now that it has adequate blood flow! 

The plan is that in one month we'll do another CT scan to look closer at that shunt. If it is the same size as now, they will go in from a different angle (remember that sharp angle she couldn't get around?) and close it off. If the CT shows the bypass has gotten smaller, then we will leave it alone and continue to watch. However, all of her doctors suspect that it will be completely closed by then. This would be absolutely amazing!! 

Angela's doctors are to be commended for coming up with this fix! Its now being written about in journals (which, I don't know) as a new option for others who have Abernathy malformations. 

But, it just wouldn't be a surgery day with Angela without a little drama, would it? So in the cath lab an catheter is inserted through a vein in the groin that is run up into the liver (or the heart, or wherever they need to get to) Just one tiny incision in the groin vein is the only evidence anything was done. That hole needs pressure kept on it for awhile so it will close off, then they put a pressure dressing on it. Depending upon what organ was accessed the patient lays flat for 1-2 hours, then slowly work their way to sitting up all the way. 

Angela had been laying flat for nearly two hours. Near the end of that time she was drinking juice and eating some crackers, which, being flat on her back was a bit tough for her and she coughed a couple of times. A couple minutes later her blood pressure took a little dip. Not a lot, but it was odd. She had  been flat long enough so over the course of 15 min or so we let her sit up. She was ready to go home so I signed discharge papers and we had just slipped her shirt on. I pulled back the blanket so we could put her pants on and OH MY GOD!!!!! She had a fountain of blood coming out of her leg!!!! "Uh oh! Problem!" I said. 

Suddenly there was a big flurry of activity. Two nurses putting HEAVY pressure (as in all their body weight) on that hole in her groin, time noted, doctor paged...again and again...IV restarted to push fluid (thankfully we hadn't pulled it yet!) They gave Angela some pain meds because it HURTS to have that pressure on one spot for so long, plus she needed to relax because she was really scared at the sudden activity. Someone pulled the blanket back further to get an idea how much blood she had lost. Holy crap!!!! She had lost a fair amount. Of course we don't know how long she had been bleeding, but the nurses suspected it was the cough that caused it. They held heavy pressure for 20 minutes then gently lifted the bandage to check again and it started right back up. It is really hard on the nurses hands to hold that pressure for so long so they switched nurses, and had to hold pressure for another 20 minutes. All I could think of is what if this had  happened in the van on the way home? I wouldn't have known and she could have bled out!! 

Then one of the nurses went to the cath lab and got a newly designed pressure dressing that allows you to see the wound without removing pressure. It was pretty cool! They put that on the wound. It had to stay in place for two hours, then they could remove half the pressure, then another  half hour the rest of the pressure but leave the bandage in place. 

Angela was finally discharged at 10:00 pm. I was a bit nervous about bringing her home but she did fine. She slept well all night, but I was up frequently to make sure she wasn't bleeding to death in her bed. 

So now we wait to see what Angela's liver looks like in one month. Yay!

Today is the Day!!

We've been so busy with projects around here that this event nearly escaped having a blog post attached to it. Angela has reminded me every day for the last two weeks that "August 16th is coming right up!"

You may remember that prior to her diagnosis of Abernathy Type II malformation, Angela's ammonia levels continued to climb. Twice she found her way into a coma due to hepatic encephalapthy. Normal ammonia levels are between 10-50When we finally discovered the hyperammonemia, and given she was still walking and talking at 250, we can only estimate she her ammonia level was somewhere around 300+ when she was in a coma. When we started treating her for what was suspected to be OTC deficiency, she was on a daily doses of Bupheynl, Ravicti and Lactulose.   Our goal was to keep her ammonia below 50. Anything over that was cause for hospital admission, and if higher than 60 she was admitted to the ICU and started on the rescue drugs Ammunol, and Arginine. Keeping Angela out of the hospital was a daily ordeal. She could be fine one hour, and the next we could be in an ambulance, her blood pressure bottomed out and her being admitted to the ICU. It was a very scary time in our lives.

When the portal shunt was discovered that goal of 50 was tossed out the window. Instead it was "don't bring her in unless she's having a seizure or in a coma". She was discharged with an ammonia level of 125. By that time we understood what the high ammonia levels were doing to her brain. Knowing that Angela was walking around with her brain being bathed in ammonia on a continual basis made me a panicked mess for several months. She required 24 round the clock awake care to constantly monitor her  neurological status, but we couldn't find a nurse to work the hours we needed. That meant Dean and I didn't sleep very well!

Thankfully we only had to wait a couple of months for her doctors to come up with an alternative to liver transplant, and on April 8th Angela had that life-saving surgery.

Angela has continued to do well. Her speech and fine motor skills have improved, her ability to swallow safely has returned and we're no longer using her tube. Her mood is AMAZING! (Unless she's PMS-ing, then all bets are off!) and she is just generally enjoying her new life. Last month we had a check up with her surgeon. This always involves an ammonia check, and we were thrilled with her numbers!!

The ultrasound showed the shunt functioning well with good blood flow. Also, Angela's liver had increased significantly in size and is now near normal size for her body! So pleased was her doctor by her current status that he moved things up a bit, allowing us to schedule her next procedure, and today is the day!!

This time Angela will not have that giant incision she had with her previous surgery. This time she will go into the cath lab for another  hepatic venogram. They will measure the current pressure of her liver (which is assumed to be very good right now.) Prior to her first surgery her pressure was at 14, which put her at significant risk of of vessel rupture either inside the liver or in her esophagus. At surgery they partially closed the shunt which caused the pressure to increase some, but not more than 12. Today they will see how the liver reacts when the close the shunt completely. One of three things will happen:

1) Her liver won't like the increase blood flow causing the pressure inside her liver to jump. If this happens the procedure will be stopped and we'll schedule a time for the Operating room for another partial closure like we did back in April.

2) Her liver pressure will increase some. If it hits a certain level (and I don't know what that level is) without going TOO high, they will go ahead and close the shunt, but admit her to the ICU for a couple of days while her risk of throwing a blood clot or vessel rupture is high.

3) Her liver will accept the additional blood flow without much drama, they will place a coil (similar to the ones used for heart defect repairs) allowing the shunt to clot off, and she will come home. The very same day!

Obviously we're hoping for #3, and her doctors seem confident this will be the scenario we see today. But I'm guarded, afraid to get my hopes up. Afraid that they are a bit too optimistic since Angela's body has never done what its "supposed" to do.

So, this morning she will take a shower with the special surgical scrub that has been our friend as long as Angela has been on this earth. Then we will go to the hospital and take a peek inside that pesky liver of hers and see if we can set it straight once and for all!!

If you could, please keep our girl in your prayers today.

16!

One thing about adopting older kids, is they don't stay little very long. Axel is 16 today. Gone is our little boy, and in his place a man!

I know on the other side of the world is his first mother, father and brother,  who all love him as much as we do. This morning we were able to share pictures, and get birthday greetings from his first family.

Today we will celebrate Axel, and next weekend have a party with his friends and some family. We can't wait to see what 16 brings!

Big sister to the rescue

August is our month for appointments! All the kids will see the eye doctor, dentist, get whatever shots are needed, and get physicals for sports.

Today was Abel's eye appointment. He really has a tough time with doctor appointments. Angela likes to come along to help him and she is great at this! Today we were in the play area waiting for his eyes to dilate. There was a group of siblings who were not very nice, but their mom was busy at the registration desk. One boy about 7 kept taking toys away from Abel. After stepping in a couple of times I was getting annoyed but reminding myself I dont know if this boy has a hidden disability. I was just about to call Abel over to me when Angela jumped in. "Abel, lets read a story!". She sat down on the floor between him and the other kids and started reading a book to him. She is such a good big sister!

Funny how that works

When you adopt a child, you are agreeing to accept whatever diagnosis may have been missed prior to adoption, or whatever diagnosis comes up later as they grow. This is just how life works, and if you don't want it to work that way, you should never adopt. Just say'in!!!

As an example, there was Axel's diagnosis of AAI (Atlanto Axial Instability) just weeks after arriving home from Serbia. This is one of those things that can happen in kids who have Down syndrome, and something as an adoptive parent I was prepared for.

With each of our adoptions we had to list whatever criteria we were willing to accept in any children who's referral we would accept. Our criteria were fairly broad: Over age 7, Down syndrome, Male or Female. We intentionally did not accept referrals of kids who also had a diagnosis of Autism or Fetal Alcohol Syndrome because we didn't feel prepared to deal with either of those diagnosis, although we knew it was very possible any of our kids could later be diagnosed with anything later on.

Audrey has been home 2 years now. For some assessments we prefer to give the kids a year+ home, allowing them to shed some of their institutional behavior, gain some language, and just generally have some experience living in the real world before putting them through an assessment type situation.

Sometime around September last year Audrey's behaviors started to change. Mostly she just came out of her shell. She became much more noisy, but her noises are just self-stimulating behavior, not communication. (though she does have singing noises, which crack us up!) She dances and sings in her own way much of the day, but there are other noises that are painful to the ears when listening to them for hours on end, primarily moaning and growling. When Audrey gets mad, watch out! Pinching, biting hair pulling and kicking. Most of these are done to avoid tasks she doesn't want to do, or get out of an environment she doesn't like. She still has a lot of repetitive behaviors that, although they are very common among post-institutionalized children, they are also common among kids who have Autism.

I have known for a long time that Audrey's behavior and functioning were beginning to look more and more like Autism. There was the question of "Institutional autism" - which is not a recognized diagnosis - which is autistic-like behaviors caused by neglect and severe sensory deprivation, which all of our kids adopted from Serbia experienced.

Audrey recently finished an assessment with a child psychologist, who went over all of her records from school, reports from us and from the county. Audrey has now been diagnosed with "Severe Autism" and "Profound developmental disability".

Yesterday we took all the kids to see "The Lion King" (A HUGE thank you to Minnesota Parent and Hennepin Theater trust for this amazing gift!!) This was a "sensory friendly" performance, with decreased sound levels, lights that stayed on, and, since there were hundreds of people in attendance who had a wide variety of disabilities, there was no need to worry about unusual noises our kids may make at inappropriate times. :-) The more I looked around, the more I realized how much three of our kids fit in with people who are on the autism spectrum. Funny how that all works, isn't it? When we say "No, thats not on our list of criteria" but that is what we will deal with anyway. Noting has changed, we have the same kids.  Only a new label, which will be helpful to Audrey in the future as we strive to understand all the things that make her tick.

Two more of our kids have assessments coming up, and I have no doubt they'll each be given the additional label of Autism. 

GOOD NEWS Check up!!!

Today Angela had a check up with her liver specialists and surgeon. First she had an ultrasound to check the bypass they put in back in April. Her liver looks great and now, for the first time in her life, is  normal size for her body! There has been A LOT of revasculature of the tiny vessels, so more and more blood is being carried to her liver. This is exactly what we wanted to see.

Angela gets a shot of Lovenox, a blood thinner, every morning. She has done very well with them, but it is no fun. She has major sensory issues about the alcohol wipe because she doesn't like stuff on her skin. The shot itself burns and leaves giant baseball-size bruises on her arms and hips where she gets the shot.

Today the doctors gave Angela some good news!

Dear Kim

I'm going to address you personally, since you are obviously obsessed with my family and would like to pick apart my parenting. Unfortunately I accidentally hit "delete" on your most recent comment instead of publish. (reflexive action, as I get a lot of spam and your comment was mixed in with several of those and my finger was clicking away. Sorry about that.)

You don't like that I used the word "inconvenience" about having to deal with my son's chemical dependency issues. As has happened many times, you missed a very large point in my post, which happens quite frequently in your comments.

*edited to add* one of the many things discussed in family therapy with chemical addition is the affect on the rest of the family, INCLUDING "inconveniencing" family members by the addict's choice to use drugs. You said went through alanon as a kid, but have you as an adult? Because it is often discussed.

Yes, it is a HUGE inconvenience to me to have to drop everything in our lives to deal with the bullshit of addiction in an adult who hasn't wanted contact with our family for 10 years. I did it anyway, because he is my son.

It is a HUGE inconvenience to Dean, who is not his father and has never had a relationship with my son - because of addiction - to drop all of his plans for a weekend away, something incredibly rare for him, to deal with the addiction in my adult son who hasn't wanted contact with our family for 10 years. The lack of contact was because of addiction.  He did it anyway, because this is my son.

It is a huge inconvenience to me to find someone to help Dean for the day with 6 kids. Because yes, he can absolutely manage the kids on  his own, but he was also in the middle of a major project here that NEEDS to get done, and he can't do any of it while watching two toddlers (Amos and Audrey are virtual toddlers)  and keeping he peace among the other 4. So yes, I had to find someone to help Dean, with very short notice, for an entire Saturday in July. This is NOT easy to do. But I did it anyway, because this is my son.

It is a huge inconvenience to me to drive my giant van 12 hours over the course of 3 days (that's a drive to Chicago and back) when I wasn't budgeting to be spending that kind of money in gas. I don't have another vehicle to drive. But I did it anyway, BECAUSE this is my son.

Do you get it now????? That it doesn't matter that something is a major inconvenience BECAUSE this is my son, so as a parent, I did it ANYWAY because that is what parents do.


Thankfully I did it. Because I was able to hear some great things from my son. About lots of different things. Most importantly I was able to hear where he has "been" for 10 years and how well he's doing "today" as he makes his plan for "tomorrow". I used quotes because I'm talking figuratively, and you might miss that.

I blocked you on FB a couple of years ago, and I'm going to tell you now, I'm done with you here too. I will not publish your comments anymore. You have nothing good to say, and normally I don't have any problem publishing comments from people who don't agree with me. (I have been posting most - not all - of yours for years, haven't I? Some you have written just to push my buttons and I deleted instead of posting them.) I can have sensible discussions with people without having to agree with them. But that's not why you're here, is it? You have nothing good to say about my family so WHY DO YOU POST HERE??? I don't normally post comments from trolls (because there are plenty of those in the adoption community) but have chosen to post most of yours because I know (knew) you in real life. But I am breaking up with you on my blog. I am done posting your comments. I will not post even one more. Go ahead and post. When I see a big long paragraph of a comment with your name attached to it, I'm deleting without reading.

The Refresher Course

Yesterday was exhausting.

It didn't have to be.

I could have chosen not to go.

After all, he is 29 years old and responsible for his own decisions. Why should I go and sit through what I already know? It is a huge inconvenience to make the two hour drive, spend the entire day dealing with heavy emotional stuff, then drive two hours home.

Because it is "family education day" at the treatment facility, and I am his family. I am his mother. I went.

And I had to talk about tough stuff. About the decisions I was forced to make as a parent. About my past.

When I was around 10 or 11, until I was around 14 or so, I spent a lot of time in Alateen. I learned at a very young age that whatever choices were made by my loved one were not my fault. I was a child and had done nothing to make that person choose to abuse their chemical of choice. I learned it wasn't because I was a bad kid. I learned it wasn't because I didn't clean my room. I learned there are NO SECRETS, and that hiding the problem just added to the problem. I also learned I never wanted to use drugs or alcohol because I never wanted to put my family through all of that.

Then I became a teenager myself, and at age 17 I joined the army. In the army in 1985 I could drink as much as I wanted as long as I wore my uniform to the bar on base. I had a lot of fun, but I also found myself in a few scary situations. I was drunk nearly every night of the week, staggering back to my barracks with my best buddy. At some point I realized I was headed the wrong direction and stopped. I remembered things from my life I didn't want repeated. When I came home my friends were doing a lot of drinking and partying. Sometimes I joined in, and sometimes I opted not to. One night my boyfriend and I were at a party. There were lots of drugs being passed around and I had to make a choice. Be "cool" and give it a try... or walk away. I left the party, and my boyfriend, behind and never looked back. I was 18 years old.

My first son was born one week after my 20th birthday, and my second just 15 months later. I can't give all the details of the next several years, because although there should be no secrets about chemical abuse, some people from my past have a right to tell their own story. I, and my kids, are no longer involved with them so they have a right to keep their own secrets. Suffice it to say, my kids were exposed to situations that went against everything I wanted for them. I got them out as soon as I was able,  but not before the damage was done.

As my kids became teens, and I a single parent of kids struggling with budding mental health problems, I had to fall back on the learning I had done at 12 years old. That even though these were teenagers, and I was giving them the tools I knew to give them, they still made their own choices. I got them help whenever they would cooperate, and I remained as available as possible for them. Before I knew it they were adults, and my ability as a parent to help them was significantly limited.

And I cried. Oh how many nights I cried for my boys, but my mother tears couldn't fix the problems. I watched each of them sinking, then swimming back to the surface trying to grab my hand, only to sink below the surface again. Eventually one found his "rock bottom" and accepted help, but the other.....my heart broke into a million pieces whenever I saw him. I leaned heavily on God, asking...no begging him...to keep my son safe. When we would go weeks, then months without hearing from him I would check the area jail rosters, and google his name looking for some hint of information. My best days were when I found him on a jail roster. I knew that he was in a bed, had food - even if it was just a balogne sandwich - and wasn't lying in a ditch somewhere. Anytime there were unidentified bodies on the news I read the descriptions carefully. When there were surveillance videos of robberies in the area I knew he wandered, I looked close at the person's build to see if it was him.

For 10 years, this has been my life. While some of you think I'm all 'wrapped up" in the kids in my house, I can assure you, there have been countless hours spent worrying and looking for that one kid. On his 26th birthday I wrote this to him and posted on my Facebook page, hoping he would login and see it:

26 years ago, at 4:18 a.m on July 3rd, 1987 I looked into your eyes for the very first time. I was just 20 years old. I will never forget the way you felt in my arms. Your baby smell. The way your hair felt. The sound of your cry.  You made me a mother. You are something to me that nobody else can ever replace. My first baby. My first son.
You were the easiest baby ever. So calm and quiet. Always content with the world, and yet so inquisitive.  

Our lives were never easy. I guess God had lessons for us we couldn't learn any other way. I tried so hard. I tried to always be there for you, to pick you up when you fell. To let you fall on your own when you were ready. To keep you out of harms way. Angry when I couldn't protect you from everything.   If only you knew how many nights I have laid awake crying for you. Praying for you. Asking God to please just keep you safe one more night. If only you knew how much I miss you.
I'll never forget you learning to pedal your first trike, your blonde hair blowing in the breeze, your big blue eyes looking back to make sure I was right behind you. "Coming Mommy? Coming?" you kept asking. I've always been right behind you Noah. I've never left. I've always been right here. I will always be right here.

And then one day a few months ago, on the day of Angela's life-saving surgery,  came this:

Note: I chose to share the headline, and mugshot, because it is public information and easy to find. And, there are no secrets about drug use. My son is a drug addict. *

Do you see that darling little boy on the tricycle? Do you see the strung out man below him? That is the stranger I drove to treatment on June 15th. I can't even fathom how that adorable, innocent little boy who always wanted to know I was with him had morphed into THAT person!

And so, yesterday I attended that refresher course.  I was reminded, once again, that its not my fault. That I did not do anything to cause his problems. I wasn't a bad or neglectful mother. Tomorrow we will sit down, face to face with his counselor, and have a very painful discussion. All things that need to be will be brought to light, both good and bad. As a 12 year old girl I wrote, then read the required letter to my loved one. Today I have written my letter that I will read to my son, and he will read  his letter to me. There will be things I don't want to hear. There will be things I need to hear. There will be emotional pain, and there will also be healing.

It is up to him from here. Whatever  happens from here is 100% up to him.

If you are a parent, and suspect your child is using drugs or alcohol, even if they are an adult, please, get yourself into an alanon meeting. Learn what it means to be "co-dependent". Learn what it means to be an enabler. Learn how to take care of yourself, and how to love your child through their addiction. Learn to find help so you can find healing.









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