When Mom's Brain Is MIA -Living With FASD

My blog posts have been few and far between these last months. I was dealing with health problems that had doctor's stumped. I reacted to medication's, spent days with no energy, and as the days and weeks wore on, felt a depression settle over me because no one could help me. As the days passed I was less and less in tune with the world around me... and the children felt it.

Having a mom who's brain was MIA, triggered trauma's that hadn't raised their head in a long time. Everyone know's that trauma can hinder a child's ability to self regulate, but it wasn't until I was floating adrift myself, that I realized how much my children rely on me. As much as I tried to appear strong and in control on the outside, I couldn't hide how torn up I was. For the past ten years, we have worked closely together to overcome the trauma that was doing it's best to undermine the foundation of trust we struggled to lay down and keep in place. That close interaction is absolutely necessary when healing from trauma, but it also means mom can't hide behind a fake smile. My children can read me like a book and even though I reassured them that I was okay, deep inside they knew I wasn't and it shook them to the core.

Old trauma's that I had forgotten about, came back with a vengeance. We had wet spot's on the sofa, eating, eating, and eating to drown the feelings of panic, meltdowns, the lying was through the roof and oh, the tears and manipulation! I pleaded with God for answer's to my health problems, if not for my sake, then for my children's. Dean and I carefully guard the foundation of trust that is being built between us and our children. The little bit of trust we have gained is so precious to us, that we go to great length's to preserve it. Knowing it only takes a few minute's to undermine that foundation,makes us all the more cautious. But here we were, weeks into this ordeal and losing out more each day. I was desperate!

How do you reassure a child who has personal experience with mom leaving? I have been here as mom for ten years, but that doesn't mean I will be here tomorrow. This child guards her heart closely, it was hurt once, and she won't risk having it hurt again. We have been making some progress, but having mom sick did a great deal of damage to the fragile trust that was beginning to form. Someone said, "How she loves you!" It is true she does, but deep underneath where no one but mom and dad could see, was FEAR! And it was driving her to try desperate measure's. 

How does a child who has zero self regulation keep from falling apart when his stabilizing force is no longer there? The answer is simple: he doesn't. Poor Joseph spent more time getting lost in our house, losing his possession's, getting into trouble and hurting himself than he has in a long time. It seemed as though his brain literally couldn't function when he was no longer grounded.

How does a child who is facing the real (to him)  fear of losing another mom react? He become's angry, he starts testing you, he pulls away emotionally. When mom is sick, it is very easy to pull away as well because who has the energy for this kind of drama when you aren't feeling well?

The coming weeks are going to be challenging because a lot of behaviors and attitude's were left slide. Fear gained a foot hold in my children's minds and it isn't going to be easy to send him packing. I would love to hear how you regroup when stability has been rocked, when attachment has been challenged, when fears that were laid to rest rise again. I have to be very careful because just as my children react to a lack of structure, too much "bonding" scares them just as badly.

Here is a quote that sums up how scattered one child felt: "Where am I? I went back and I was right, but now I can't find where I am." 


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A Fight or Flight Response Rather Than Manipulation - Living With FASD

Joseph has an uncanny knack for figuring out ways to get around the rules we have in place for his safety. I find it incredibly frustrating that this child who cannot follow a two step command, can think of complex ways to get under our radar. For instance, and this is something that happened a long time ago, Joseph went through a phase where he had very "sticky fingers." He saw it, he wanted it, he took it. This was happening mainly at school, so I stitched his pockets closed. Next he sandwiched items between the books in his back pack, so I bought him a clear plastic back pack and made sure to thoroughly look through it before he left for school and again when he came home in the afternoon. He then smuggled things home under his clothing. Somehow he always stayed one step ahead of me, which did not help him feel secure. 

We have an alarm on his bedroom door as he has a tendency to roam the house at night, something that makes me incredibly uneasy. He learned if he opens his door very slowly, the alarm doesn't ring and he can slip out of his room unnoticed. We had been suspicious that he was somehow getting out of his room without our noticing it, but when we checked his alarm it was working. One day he opened his door a little too fast making the alarm ring, thus giving away his secret. His next tactic was loosening the alarm. It is plugged into a receptacle in the hallway so we can hear the alarm ring throughout the house. If he jiggled it a little each time when he walked by, it eventually quit working. We discovered what he was doing when he jiggled it a little too hard one day and it fell to the floor with a crash. After that he was a bit more cautious, only opening his door when he saw the alarm was unplugged. For awhile I diligently checked his alarm at nap time and bedtime, but eventually got sloppy because everything checked out....and then he was soon back to going through the cupboards and the refrigerator, or taking things to play with into his room. 

There have been countless incidences like these over the years that leave Dean and I shaking our heads, wondering if we should laugh or cry. Sometimes I do a little of both!

The other day someone asked this question in one of my FASD groups, and I am paraphrasing here: "Why can our children with brain damage have enough "brain power" to manipulate the rules to get what they want?"

There were many great replies, but the one that applies best to Joseph was written by a friend of mine. She said she thinks it has to do with fight or flight. The child relies on himself meet his own needs, because he is unable to trust others to meet those needs. In their minds we as parents get in the way of having what they perceive to be needs met, when we say no to a request.

That describes Joseph very well. I know understand why he melts down and why, when we say no, he will try to figure out other ways to get what he wants. These actions always felt so manipulative, but now I realize he is simply reacting out of fear that his needs won't be met.

For me knowing the why behind a behavior makes it easier to cope. Somehow it no longer feels like Joseph is intentionally trying to drive me crazy with his various escapades. Deep in my heart I know it is brain damage that makes him react in the way he does, but when someone appears to be intentionally manipulating you, it is so hard not to take it personally. Knowing he is reacting because he fears his needs won't be met, creates empathy versus frustration in my heart. Of course, Joseph can feel that and responds in a more positive way. 

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Life Lesson's, Progress & Finding The Grace For One More Day

I have found that we have to be very intentional about teaching life lessons to our children. Trauma and brain injuries on various levels, seem to have robbed them of the ability to see and apply lessons that one may not have to make a conscious effort to instill in a healthy child.

One of the biggest is the mind set that, "I messed up, now it is no use to even try," which results in a severely restricted life style because the child cannot/will not rise above the circumstances. Their poor choices become a self fulfilling prophesy. "I told you I was no good, now I have proved it."

Someone with a healthy self image will realize that, "I messed up, but everyone messes up, so I need to stand up and try again." Not our children. We can talk, cajole, bribe, let them wallow in their misery, attempt to boost their self image, and talk some more.... it doesn't help. If I am honest, there are times when I think, "You want to be this way, then fine. Sit here in misery till you are ready to work on your life." While there are times a child has to sit and stew for awhile, our children will remain there for weeks, months, even years because for them, the issue goes much deeper. It is a truly dark self image many of them struggle to over come. If adoption is part of the equation like it or not, many if not all, will struggle with the question of, "Why wasn't I wanted," or, ""If my mom/dad loved me they would have done xyz to get me back." Their minds can't grasp the hold trauma/addiction and generation's of abuse and neglect can have on a person. As a parent who has never suffered what they have, my words don't carry much weight because, and rightly so, they know I have no idea what it is like to live in their circumstances.

Recently a child has healed to the place where we are able to explain that, "You messed up, so consequences/boundaries will follow because they are necessary to keep you safe, especially when you are in this mood. BUT you do not need to stay in this place of despair, make good choices and then we will reconsider the boundaries. Prove we can trust you to make good choices and more freedom will follow."

The other week the child made a poor choice that directly affected an upcoming activity. We had a rough week, because she felt that is was useless to even try. So I sat her down, and laid every thing out on the table. "You did ___________, this is the consequence of the action. Your current actions prove that our decision to withhold you from ___________ were correct. However, if you can prove to us that you can handle this activity by making good choices and working on your life, we can possibly reconsider." When I think healing is not taking place, I look back to 6 months ago and know we could not have had this discussion, it would have been too much expectation, too much at stake and she would have failed ...which would have proved in her mind that she is a, "bad person who can't do anything right," ... her words, not mine.

Well guess what, she got her act together, she worked on her life, she tried and she earned back her privilege to participate in the activity we had removed due to her lack of trying to make good choices. I smiled, hugged her and whispered, "See I knew you could!" I didn't dare say more, because her self esteem is too fragile for much praise and over doing it would have flipped the scales.

We recently spent a few days at the cabin with my family. Biking on the old railroad bed, is always a highlight....but not when you have to ride with mom and dad while your brother n cousin ride ahead. Dean gave her permission to ride a bit ahead of us, but the rules were, "Only so far ahead." Well the distance widened and widened, until she was no longer within shouting distance. Dean pulled her aside and told her she needs to bike with us. She promptly shut down and refused to ride correctly. I finally pulled her off the trail and asked, "What is wrong?" 
"I want to ride ahead and now dad won't let me!!!"
"Riding ahead was a privilege you had to earn by riding with us and following the rules, remember?" A little nod... "When you proved that you are trying to make good choices, dad left you ride ahead but only if you stay near by. When you rode farther than dad gave permission, he said you have to stay with us, right?" 
"But it isn't fair!!!!"
"This isn't about fair, this is about obeying the rules and making good choices. Now you have a choice to make, are you going to accept your consequence and make good choicyes, so that dad may consider giving back the privilege of riding ahead, or are you going to be grumpy and tell yourself that you are just a bad person who always makes bad choices and never gets to do anything?" She gave me a sheepish look and I reminded her of her how she had earned back a negated privilege just days before. "Why did we give your privilege back? Because you were grumpy n didn't try, or because you worked on your life?"
"Because I tried."
"Very good, and this is the same way. You need to work on your life before you earn privileges."

She biked in silence for awhile, but was soon chattering about the things she saw and all was right with her world again. It is instances like these that prove that yes, healing is taking place. All the time, effort, tears and prayers we pour into our children's hurting and broken hearts and brains that have suffered extreme trauma, really are making a difference. Little by little, step by step!

Parenting is hard work, but trauma and brain injuries compound an an already difficult task one hundred fold. When your child's progress is so slow, you really can't see it unless you look back over the years and carefully analyze the whole picture, it can feel hopeless. Blogging had helped me see that, yes we are making progress! 

Joseph was able to bike the whole trail without one melt down. Two years ago we weren't very far into the ride when he shut down and quit. As we rode over the stretch of trail where the first spectacular melt down occurred, Dean said, "Remember the last time we tried this?" Granted, we have learned a few things since then, things about stimulation, not giving privileges that he cannot handle just because we are at the cabin, eliminating sugar and gluten, among a host of other things. However the fact remains, Joseph is making progress, Kiana is making progress despite the fact that Dean and I still feel as lost as ever most days, but each day we get up and by God's grace, try again. 

This paper hangs on our refrigerator where our children can easily see it. Having a visual reminder that Respect, True Words & Actions plus Obedience = Privileges and Better Relationships has been very helpful. 

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