Wednesday, March 29, 2017

Chaos And Redemption

Most people have heard of the push pull relationship, if one can even call it a relationship, that many parents have with their child with RAD. They pull you close, push you away, pull you close, then push you even harder, it's a never ending cycle.

Those who suffer from RAD, are terrified of bonding with anyone because in their minds a bond means opening the door for abuse, abandonment and even death. At the same time deep within themselves, so deep they most likely aren't aware of it's presence, is a desire to be loved. That desire causes them to reach out for love but as soon as they receive it, their terror pops up and they push the giver as far away as possible. Then there is the aspect of manipulation... they know their parents are trying to build a relationship with them so they will "offer" their affection as a means to attain something they want. This type of relationship wears a parent out in a hurry.

While we are no longer on the "Raddercoaster" as some call the roller coaster of emotions that go with RAD, we are on a similar ride but this one is even more complex if that is possible.

This ride is parenting a child with FASD alongside a child with an autoimmune syndrome that attacks the brain. Sometimes I get whiplash from the back and forth and round and round. The hard part is knowing if the child's actions are due to fear i.e. separation anxiety, control - because they are scared of a relationship, since getting close to mom means it is going to hurt so much more when she dies, brain inflammation which makes a child feel ornery and out of control or is it just typical childhood behavior? Each and every different scenario requires a different mode of treatment. Many times the child is either unable to tell you what is wrong, refuses to do so because he is out of sorts or sometimes he truly doesn't know. So before you can go about figuring out what the problem is, you have to decide if the child has the ability to tell you what is wrong and if so, are they telling the truth or intentionally leading you down bunny trails to throw you off.

Then there are days when you have two or more acting out at the same time and while you are trying to make sense of it all, they begin feeding off of each other and the child who was telling the truth about what is going on is suddenly triggered by the lying and screaming coming from another child, so he proceeds to join in the chaos. 

There are days when I don't know if I am coming or going. I call Dean and say, "So and so is doing xyz and I have no idea why. What do you think is going on?" Amazingly he often has an answer to my dilemma or at the very least some insight into what is going on. The children know if they are successfully snowing mom and she calls dad, the game is over because dad can usually see through their antics. 

What complicates matters is I can tolerate only so much before my brain begins shutting down. My children can sense when this is happening and it sends them into hysterics because they realize mom is no longer able to handle the junk they are throwing at her. This triggers their abandonment issues, which in turn kicks up the the fight or flight response. Our two middle children may either run or rage, you never know but you can count on them to choose to respond the same way if they are both melting down at the same time. We either have two runners or two screamers,  sometimes it feels like the walls vibrate with the noise.... maybe the foundation is cracking? :)

This is all fresh in my mind because yesterday was one of those days. We were all a mess, mom was tired, the two middle children were totally dysregulated, Lia was tired, big brother was fed up with the whole mess and dad was working a bit late. It is almost funny now but at the time it was anything but. The three little's and mom went to bed early and we all awoke in a better frame of mind. Now we get to go for therapy this afternoon, which is sure to bring up lovely issues which are in a class all their own. 

As I was pondering all this and feeling like a failure, this amazing post came up in my newsfeed: God's Amazing Grace For Parents and I realized my problem, I am trying to excel at this whole parenting thing and end up falling on my nose more times than not. Where did I get the idea that I can do this? I can't, but with God in me I can and so can you!

Friday, March 24, 2017

Two Big Questions Christians Face When Considering Adoption Disruption

An unexpected blessing that came out of one of  the toughest decisions we have ever had to make, that of disrupting an adoption, is the many wonderful people I have the opportunity to connect with via email and phone calls. I thrive of helping others who are in situations that they feel are hopeless. That is probably due in part to the intense relief and gratitude we felt when others have been there for us over the years.

 Two questions come up time and again when I am talking with people who are considering disruption. The questions are ones that I wrestled with at one time or another over the years B was in our home and when we were trying to decide if we really had dissolved all our options in seeking help for our family.

The first question is, "My husband is not ready to take this step, but I feel like I am drowning," or if I am speaking with the father, I usually hear, "My wife says I have to choose between her and the child."

My answer to this question is to explain why a child targets his/her primary caregiver, which is usually mom. Mothers are the nurturer's, they are the ones who hug and kiss the scraped knee's and stubbed toes. She is the one children go to when they need extra love and support. Naturally as a mother, when a new child comes into your home, you want to do all you can to bring healing and happiness to this hurting child. But many times, the child has already learned that the world is an unsafe place. He has learned to hurt others before they can hurt him, especially in regard to adults. The harder mom tries to get close to the hurting child in her care, the harder he is going to push against her. For various reasons, dad  doesn't often receive this same treatment. For one the child typically doesn't spend as much time with dad, thus the threat of a relationship building is not as great. Second the child knows part of keeping mom at bay is getting between her and dad so if he is mean to mom and but is a sweet charmer when dad is around, he will cause conflict between them.

The second question I hear is, "Is it right for Christians to disrupt an adoption? The Bible tells us if we trust in God, he will supply all our needs. Does the fact that I am struggling so badly indicate that I don't have enough trust?" I wrestled with this question for a long time. As Christians we are brought up on the concept that God is all we need, making us feel like their is something wrong with us spiritually when we come up against a block wall. When that wall is being unable to build a relationship with a child, you feel really helpless and like the worst kind of person. When I brought the verse from Philippians 4:19 into the equation, Dean told me that perhaps finding a new family for a child is God's way of supplying our need's. God doesn't always answer prayer the way we think or even wish he would, sometimes he allows us to go through things that feel so twisted and complex that there seems to be no way out, so he can reveal his awesome power. I am in no way suggesting that disruption is something that should be done lightly but there are times when a fresh start is the best gift you can give a struggling child. 

We were told that sometimes a child who is not doing well in a particular family, feels he is unable to move beyond the pain he has brought upon his family. In such instances, a fresh start may be all he needs to succeed. 

 Another reason many family's are led to disrupt is because the child is abusing younger siblings. Moving a child to a new family where he is the youngest child, thus not faced with the opportunity to re-offend, may be what he needs to begin healing. 

Sometimes one or both parents are ageing or in ill health. A child who has RAD/attachment issues will not feel safe with someone whom he knows is not strong enough physically to keep him safe from himself. Many of these children, if they were able to reach deep enough inside and were willing to acknowledge it, would admit they are scared of themselves. They are longing for someone "strong enough" physically and emotionally to stand up to them and keep them safe.

Sometimes a parent will remind a child of their abuser, through no fault of the parent. Body language, tone of voice, hair color....many things can remind a child of the person who once hurt them and while they know this is a different person, they are still triggered and unable to heal. In such situations finding the child another family, a family where he is not daily triggered may be all it takes for him to move on in life.

Finances play a large part in the equation of  parenting children with attachment disorders. This is no run of the mill issue that will resolve itself. It requires years of therapy, inpatient treatment, psychiatric medication and typically, therapy for the rest of the family who is on the receiving end of the child's pain and abuse. Finding affordable care along with knowledgeable staff who can invest the time and emotional energy required to help these children heal is tough. Many family's simply can't afford it.

These are just a sample of the many things parents and their hurting child are up against. As parents, we are charged with keeping our children safe both emotionally and physically.Sometimes that protecting involves finding the child a new home, a home where he has the opportunity to succeed.

Monday, March 20, 2017

Tough Emotional Knots

We were invited away for lunch yesterday and on Saturday evening I casually mentioned to Dean that I need to text his sister to see if we are supposed to bring place settings. 

  A short while later Joseph's began giggling hysterically, a sure sign that something is wrong. I asked him if he has big feelings but  he denied that he does, so I told him to sit on a chair and tap. Tapping gets the two sides of the brain to work together and sometimes the child can then figure out what is bothering him. Joseph wasn't impressed because he honestly had no idea what he was feeling.

I asked him to tell me some of the feelings he has sometimes. He started with worried, which supported my hunch about what was bugging him. With my help he was also able to list mad, sad, scared and happy.

I asked Joseph if there is something that is worrying him. He said there isn't so I asked him to tell me about some things that do worry him. He immediately said, "When we go away and there are lot's of people."

"Can you tell me some places where there are lot's of people?" I asked. He said, "When the whole family gets together." Meaning mine and Dean's brothers and sisters.

"Did I say anything about any of them recently?" I asked and he thought for a bit before shrugging his shoulders.

"I said something about them when we were eating," I said. "Do you know what I said?" He shook his head but then he said, "They are probably coming here." I assured him that they aren't and his face brightened. Let me clarify that there isn't anything about our extended family's that give him big feelings, it is groups of people that unnerve him. Even going to church has been upsetting him lately, it seems being in a crowd drains his brain of it's ability to function.

People with FASD often have a hard time understanding their feelings. They need someone to come alongside them, someone to help sort through their emotions and reactions to situations. Joseph would have gone to bed tonight overwhelmed with big feelings and most likely he would have thrown a tantrum because he didn't understand the anxious feelings he had inside.

Because of their inability to define individual feelings, they are all jumbled into a ball we call "big feelings." Big feelings can be brushed under the carpet but trust me, they will return with a vengeance at a later time. When they return they bring along all kinds of additional feelings that were attracted to the ball of undefinable feelings. Then you have to pick them apart, kind of like un-knotting a string that has multiple knots, if you pull to hard on one knot or big feeling, the whole mess just gets worse. The key is to catch those big feelings and lay them out on the table before they have a chance to grow. The trouble is, who feels like beginning a chat that has to potential to last hours? 

I wrote this post on Saturday evening then left it as a draft, never completing it. After this hair raising day I came back to it and was reminded that there are bright spots in this ongoing challenge called trauma parenting, amazing how quickly I can forget them!

Wednesday, March 15, 2017


Thanks to everyone who watched and shared the PANS/PANDAS video on yesterdays blog post. I received quite a few questions and thought I would do another post on the topic and give a little more insight into what PANS looks like for Kiana as well as why it is so difficult to find and acquire treatment.

How will I know if my child may have PANS/PANDAS?
Both diagnosis have an acute onset. Overnight the happy child is gone and in it's place is a child who has anxiety, fits of rage, OCD and tics among other things. 

How is PANS/PANDAS treated?
With antibiotics, anti inflammatory's, supplements and IVIG. The trouble is, most long term treatment with antibiotics is not covered by insurance, so doctors who successfully treat this illness do not take insurance. IVIG is a successful treatment but the cost of $5000-$10,000 per 10 pounds of body weight is not something many people can afford. Diet, supplements and life style changes are also incorporated to aid healing.

What is a Flare?
A flare is when you see an onset of new or recurrent symptoms. For instance, Kiana can be doing well and suddenly the rage is back. This rage is slightly different than a "trauma rage," although I can't really explain the difference other than it feels different and it is an angry rage versus an afraid rage. We are still working at getting Kiana back to baseline. She hasn't returned to the happy, healthy child she was over a year ago. When she returns to baseline and remains there for app. a year, she can discontinue treatment, although the disease can and will, return at any time.

Are the symptoms always the same?
No, they constantly change, although for Kiana, rages, verbal tics and intrusive thoughts have always accompanied a flare. Verbal tics are when a child makes constant noise with their mouth, not usually words, just noise. A morning of constant noise is enough to make my ears hurt. Intrusive thoughts are when a child has thoughts they cannot control, most often thoughts of harming themselves or others, which is terrifying for them. There is a huge variety of actions/behaviors that can be classified as tics, including facial grimacing and awkward body movements. The anxiety that usually accompanies this illness can be debilitating. Many children cannot even attend school because of their intense anxiety. Thankfully Kiana has not experienced it to that degree and the school has worked with us when it has been a problem. There can also be a host of physical side effects in addition to the devastating mental ones. PANS/PANDAS is an auto immune illness so one never knows what will be affected.

Will she ever be cured?
There is only speculation at this point as to how a child with this illness will be affected in adulthood. For now once she returns to baseline, if that ever happens, we will continue to treat each new flare as it comes. PANS, which is what Kiana has, is triggered by infections/stress and due to the trauma she has already suffered in her life, she is prone to stress which makes her illness more complex. This also makes it more difficult to get her to baseline as she is constantly faced with things that trigger her PANS.

Tuesday, March 14, 2017

The Faces Of PANDAS And PANS

A fellow PANS/PANDAS mom made the following video to help create awareness of this devastating disease. It is also a tribute to a brave young man who lost his life because of the pain and emotional turmoil he endured. Please watch it and share it, our hope is that by sharing our children's struggle's the medical field will recognize and be willing to provide affordable treatment for these children. 
                 The Faces Of P.A.N.D.A.S. And P.A.N.S.

Monday, March 13, 2017

Empathy - When It Is Hard To Love

Do you know what is so hard about parenting children who's lives would be "so much better" if only they hadn't been adopted? 

Empathy. Being empathetic when a child is intent on proving that you ruined his life when you adopted him, therefore you must pay can be devastating.

When he cannot face the pain of accepting that his birth mom/dad messed up or whatever the case may be, he has to project that anger and frustration somewhere. Guess where? Usually it's mom.

In order for the child to heal from past trauma, he needs someone who can take his pain and his rage and still love him in return. That is hard, really hard.

Saying "I am so sorry you cannot live with your birth parents," while remembering the situation your child was removed from can be difficult. Add in the sacrifices your family made for this child, sacrifices that you made willingly, but the child brushed aside and trampled because he is so full of pain and rage from things done to him by his birth family, and it is doubly hard to be empathetic.

When your heart is torn between sympathy for your child and pain for what the rest of the family has to endure because of his rage, it is tough to keep things in perspective.

It would be so much easier to say, "If that's the way you want it, then have it your way," effectively closing your heart to further pain. But the hurting child wouldn't heal and he is just as much a victim of circumstance as you are, although it can be easy to lose sight of that fact when he is the one unleashing havoc in your home.

As an adoptive parent you will have to choose between empathy and closing your heart. The latter is easier but the former is the only way to healing.

Parenting children with trauma, especially when that trauma causes attachment difficulties, means opening your heart to pain and anguish. 
It means making choices for your child, choices that may make your child turn against you for a season because he cannot see the big picture. 
It means fighting for your child when everyone else wants to give up or punish him for the seemingly atrocious acts he has committed, without looking at the driving factor behind the act. 
It means loving a little wildcat who would sooner die than allow you into his heart because he has learned that adults only want to hurt him.
It means holding your child close after he intentionally destroyed a project you spent weeks completing.
It means choosing love when your heart wants to wither and die from the pain this little person has brought into your life.
It means loving again and again, when you really wanted to throw in the towel the day before yesterday.

Saturday, March 11, 2017

We Found A Therapist!

Our "therapist finding fiasco" may finally be over! I have been calling therapists near and far, searching for an attachment therapist to no avail. No one was willing to work with Kiana and I together, they all did "traditional therapy" where they meet with the child for a portion of the visit then with the parent and child together. Anyone who has a child with attachment or trauma knows that you Never leave your child alone with a therapist. One reason is that therapists are mandated reporters and are required by law to report anything they think signals abuse. The other reason is that these children are prone to lying. If the child has an attachment disorder they will intentionally lie to keep a wall between them and their parent or caregiver.

A good attachment therapist will laugh when you ask if they meet with the child alone. They know that doing so puts not only the parent but the therapist at risk because there is nothing to keep the child from making up stories about their therapist. I am amazed at how many child therapists still insist on meeting with the child alone, don't they understand what is at stake?

Anyway, two weeks ago I called a therapist that friends have given high marks. I left him a message and when he returned my call he was very professional. He told what types of therapy he uses and why. H said he would never see Kiana alone unless both him and I agreed it would be necessary for her healing. But the what really made me happy was when I mentioned that Kiana has PANS and suffers from tics/compulsions and tantrums. He told me he works with a psychiatrist who works with children who have PANS/PANDAS! He said it is nearly impossible to get an appointment with her but they work together so he is sure he could get us in. Best of all, he said if I was willing to make appointments as we go, rather than having a set date/time, he could see Kiana immediately! 

Kiana had her first therapy appointment this week and I was very pleased with how well it went. Kiana talked and the therapist knew what he was talking about. Both the therapist and I came away amazed at what the other knew about trauma. 

We even talked about B! Kiana said she sometimes acts out to see if we will find her another home, which wasn't news to me. We have discussed this umpteen times, but as is typical for children with a history like hers, she didn't believe us when we explained the differences between her needs and B's.

Kiana told the therapist that she really likes horses and he told her that his wife has one. "You may come live with us, then you can ride as much as you want," he offered. I will admit I suddenly had serious doubts that he knew what he was talking about, but I shouldn't have worried. Kiana looked at him and said, "I don't want to!" He asked why not and she said, "I don't know you." He agreed and said, "So are you saying you wouldn't feel safe living with me? Do you feel safe at home with mom and dad?" She nodded her head and he said, "I don't know B but I am guessing he didn't feel safe at home. He probably would have wanted to come live with me. That is the difference between the two of you." I saw the light bulb go on, so I knew Kiana was taking in what he said. That is exactly the kind of therapist we were looking for, someone who can reiterate what we tell Kiana, someone who can help her see that we really do love her.

Even though the appointment went better than I even dared hope, I came away exhausted. I had forgotten how hard attachment therapy is! Please pray for Kiana as she continues therapy, we got a glimpse of how bringing up all this junk will affect her and we covet your prayers. 

Tuesday, March 7, 2017

World Perception - Life With FASD

Having a child with FASD requires parents to always be on their toes. These children often have complex social/emotional difficulties and perceive their world in ways that are foreign to the majority of society. I have struggled to understand how Joseph's mind works so I can better understand him and what I have been discovering is sobering. 

It often seems as though Joseph is deliberately lying. We used to get incredibly frustrated because when we had a situation we were trying to figure out, his answers just made the problem worse. Asking him a simple question such as, "Where were you when xyz happened," can result in multiple answers some of which make sense while others make no sense at all. Asking the same question two minutes apart guarantees two different answers. It looked like he was lying to protect himself. As I learned more about FASD, I came to understand that those affected perceive the world differently. For instance, this morning we heard the train blow it's whistle at a crossing nearby. Joseph said, "It is going to be cold, Dad said when you hear a train that means it is going to be cold outside, I think he said that about two years ago." What Dean really meant was, when we can clearly hear the whistle it will probably rain soon due to the air moving in the right direction. Joseph thought he meant the coming rain makes the train blow it's whistle.

Joseph wants to give the right answer to a question so he will say what he thinks we want to hear whether it is the truth or not. He isn't trying to deceive us, he has a childlike desire to please us. It took us a long time to figure that one out.

Another twist is that those with FASD have gaps in their memory and due to their slow processing they don't always hear every word that is said so they fill in with what they think happened. Last night Joseph and Lia were picking on each other. I didn't see what happened but it was a he said/she said situation. Their stories didn't line up but both of them made sense. We were trying to figure out who was in the wrong and the story kept getting more complicated. I finally looked at Dean and said, "Remember what we just listened to the other evening? Why are we doing this?" I was referring to a video by Diane Malbin entitled The Fred Example. If you have someone with FASD in your life do both of you a favor and listen to the video. 

People with FASD are often gullible and get the bad end of the deal. Another video I listened to: FASD And Practice: Issues For Probation Officers shared this example. A group of teens takes a car for a joy ride. When they hear sirens in the distance they hand the keys to their friend with FASD and tell him to hold them until they come back, they then make a run for it. When the police arrive they find the individual affected by FASD holding the keys, patiently waiting for his friends to come back, he never realizes he was taken advantage of. 

A friend shares the story of a child who was implicated in a "crime." Eventually his name was cleared and he said, "You mean I didn't do xyz?" These children can't trust their own memory. If everyone insists they did something they assume they did. To make things even more complicated, they are very good at making up a plausible sounding story about the happening. We had this happen with Joseph he admitted to something he didn't do and we believed him because the evidence pointed to him. Later I asked him why he said he had done the deed when he hadn't and he said, "You said I did so I thought I did." That was a very sobering moment for us, I felt terrible the poor boy!

At the end of a training on a video the question was asked, "How do you go about getting a credible story from someone with FASD?" The answer was, "You may have to accept that you won't be able to get one." 

Monday, March 6, 2017

Encouragement From God

I am continually amazed at the many techniques God uses to show me truths as well as encourage me.

Our children always seems to be dealing with something which is typical when a child has multiple levels of trauma. Adoption always includes loss and pain add in a sibling with RAD and a disrupted adoption and it is little wonder they sometimes drown in grief.

As children and adults tend to do, they try to assuage that grief by various means, most of which aren't helpful.

Yesterday at church I was encouraged and blessed by comments from various speakers.

We were challenged to fully accept and embrace our God given calling in life. I had a very disgruntled child by my side. This child had been making very poor choices over the past 24 hours leaving Dean and I begging for prayers and wisdom. The other three children were having a very hard time dealing with the chaos and drama brought on by hours of raging. A friend texted me and said when this happens at their house the rest of the family leaves until the storm dies down. This text came at a crucial point and was just what I needed. I packed up the three remaining children and we went to the local donut shop drive through. We went home when Dean texted  that things had calmed down. Thinking back over our tumultuous evening I was convicted to stop trying to create what I would call a typical family setting and instead create a home where my children can thrive and grow even if it draws me out of my comfort zone.

The message at church included the story of the men who carried their sick friend to Jesus for healing. Upon finding the house crowded they risked their safety and took apart the roof, creating a hole large enough to let down their friends bed. They did everything they could to get their friend to Jesus. We were encouraged to look around us and find those who need us to bring them to Jesus. I once more thought of my disgruntled child. I caught Deans eye and we both had to smile. 

Dean had a talk with Tristan over the loss of dreams, something everyone deals with from time to time. In his 13 years Tristan has had to give up some pretty significant dreams. Dean encouraged him to use those losses as building blocks rather than stumbling blocks. The message reiterated many of the things Dean pointed out as he tried to help Tristan understand why he feels some of the things he does. We are continually amazed at how often God uses Dean and I to reaffirm what the other has been telling a child. When Dean or I spend time guiding a child through an issue we usually have the child tell the other parent what they have been told. It is easy for our children to agree with what they are hearing but when they have to tell the other parent what they have learned and why, it helps them own the conversation. Usually the parent who is listening to the child tell what they learned has a few points to add and we often hear a sheepish, "That is what mom/dad just said!" Hearing something from two different people has a way of driving the lesson home and God continually gives us the words to do just that.

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Friday, March 3, 2017

Does Your Child Know He Has FASD?

Does your child know he has FASD?
If so, when did you tell him? 
If not, when do you plan to tell him? 

How do you tell a child that his brain is damaged because of alcohol, which is a preventable disability? 

How do you explain that he will never be like children his age, or do you just gloss over the topic and hope he never asks?

I think every parent has to know when, how and if they are going to share this information with their child. It depends upon the child's ability to understand, process and not abuse the information. You probably won't be doing your child a favor if you tell him his brain is damaged if he is unable to understand that he is different.

We struggled with this issue more when Joseph was younger and the gap between him and his peers wasn't as large. This gap made him appear to be less affected by alcohol and we often wondered how we will explain things to him when he begins to ask questions. At 9 years old, he is still very much like a 3 or 4 year old and thus far the question hasn't come up.

A few years ago on one of his good days, we were riding on the trail wagon. There was a warning sign on it stating the dangers of operating it while under the influence of alcohol. Joseph was reading the sign so I took the opportunity to explain what alcohol is and how it affects the body. I causally added, "Your birth mom drank alcohol when you were in her belly and it hurt your brain. That is why you feel so frustrated sometimes." He looked at me and said, "Does that mean I will have to wait until I am 16 to drive the trail wagon?" That was my signal that he couldn't process what I was trying to tell him. From time to time I will make a statement concerning his struggles, opening the door for questions but so far he hasn't asked for more information.

While it would be so nice if Joseph's brain were healthy and whole enough to ask questions, it is a blessing that he is unable to realize the depth of his disability. He is quite content to have mom and dad be his external brain and as long as everyone requires strict boundaries, he feels safe and secure.

Earlier I mentioned abusing the diagnosis of FASD. Many children with this diagnosis have times when they are able to use their disability to their benefit. As parents it is our responsibility to teach our child that this diagnosis is not an excuse for negative or irresponsible behavior. However we must be aware that there are days when our child is unable to take responsibility for their actions and we need to advocate for them in these situations.