Monday, October 8, 2018

Finding Peace While Fighting Lyme

The past months have been one wild roller coaster ride. I thought I knew about Lyme after all we went through with Kiana during the last two years, but I came to find out that I had no clue, none. I didn't know how horrible the human body can feel, how rotten from the inside out. Kiana was unable to tell me how she felt beyond complaining that her head hurts or her stomach doesn't feel well. She would roll and toss on her bed, throw her body against the wall, and scream. I didn't know how to help her, and if I am honest, there were times when I felt she was being overly dramatic. I don't think that anymore, in fact, I now wonder how she kept going with how terrible she must have felt.

 Lyme has a way of putting blinders about your eye's and brain, so you can only see and focus on yourself not a good thing for a mom. I have been spending my days on the sofa, pounding Heavens Gate's pleading for answer's and  struggling to find joy and purpose in life. When I emailed a friend telling her my woes, she said, "You sound as if Pharoah's army is behind you and the Red Sea is before you! That was a pretty apt description of the terror and emotional overload that Lyme is known to inflict on those with the disease. Lyme, coupled with teaching and parenting traumatized children, was pushing me under and I felt like my prayers weren't being heard. Home schooling was/is my biggest struggle and everywhere I turned I was met with another solid wall.

Then last night Kiana came to me and said she needs to talk. This in and of itself is a huge improvement. Maybe the oft repeated message, "Use your words!" Is finally sinking in! Getting off the sofa and walking back to her room required a huge amount of energy on my part, but the poor girl has only had a shadow of a mom here of late, so I mustered up the energy to follow her. She has had some traumatic experiences in life and while some counselling would be helpful, with her it is never that easy. Anyway, she said, "Mom, sometimes I think God doesn't even care about me anymore. He keeps letting me get hurt and I am not like everyone else and it just isn't fair!" 

I had to smile to myself because I had just been having a similar discussion with God. I knew I was being irrational, but I couldn't seem to help myself, now I had my daughter looking to me for answers and I knew I couldn't just give her a glossed over reply because she really wanted help. This is what I told her, "Kiana, mom has been struggling with the same feelings. I feel like God doesn't hear me either, things just don't get better and I feel like giving up. I know exactly how you feel." We talked about sin and how God gives everyone a free will, which means people will make bad choice's, we will get hurt and bad things will happen. We will lose loved one's, our health, our friends, and there will be times when life doesn't seem worth living. I explained that Satan wants her to feel discouraged, he wants me to feel discouraged, and if we let ourselves think that God doesn't care Satan is getting the upper hand. She connected with that thought and we talked about ways we can help ourselves climb, and stay, out of the rut of discouragement even when our brain's and body's feel sick. 

When Kiana jumped over to the Lego house she had built and began showing me her newest creation I knew the crisis was over, but it wasn't only Kiana that was feeling better, I was too! Somehow having to verbalize all that, having to put my self pity aside and come up with biblical answers to her questions, made me realize just how far down the wrong trail I myself had gone. 

I saw a quote recently that said: 

"We are too prone to engrave our trials in marble, and write our blessings in sand."
                        C.H. Spurgeon

I was quite challenged by that quote because in reality, God has worked many miracle's in the past year, but instead of focusing on them I am so prone to focus on the day to day struggle of putting one foot in front of the other. So as I sit, I will count my blessings, rather than fret about the, "What if's."

Wednesday, September 19, 2018

A Bid For Freedom - When Mom And Dad Become Complacent

Joseph has a way of throwing us for a loop whenever we become too complacent about enforcing rules and boundaries. We have multiple supports in place to ensure his safety, and our sanity, and when we remember to implement those supports we don;t have as many melt downs. The trouble is, there are umpteen things to remember. Things like, sensory issue's, dysmaturity, trauma trigger's, and the list goes on. To complicate things even further, there are times when certain supports aren't needed and we forget about implementing them, until something happens and we suddenly realize we haven't been doing _______ for awhile.

One of Joseph's supports is his door alarm, a simple magnetic door alarm that Dean fastened to the top of his bed room door. We have a remote in the hallway that rings loud enough to catch our attention anywhere in the house. We installed the alarm when Joseph began wandering the house at night and eating whatever struck his fancy. As his brain doesn't tell him when he has had enough to eat, we quickly ran into problems. We put the alarm on his door and didn't say much about it. He assumed it was placed there to keep bad guys out of his room and no, we didn't plant that idea in his mind he came up with it on his own.

At first we faithfully made sure the alarm was plugged in and in working order, but eventually as he was no longer testing his alarm to be sure it was working, we got sloppy. Then we would find an empty food bag, a stash of wrappers behind his bed or stuffed into a hole in his wall, and we knew we had better keep an eye on that alarm again.

The other night, something woke me out of a sound sleep. I still don't know what it was, but I suspect it was Joseph's bedroom door squeaking as he cracked it open to check if the alarm was working. A few seconds later his alarm went and I assumed he was coming to tell me that he wasn't feeling well. He has been dealing with some health issue's and I told him he must come get me when he doesn't feel well. When he didn't come to our room, I decided I had better go check on things. I went to look what was going on and found him lying on his bed, hugging his stuffed puppy, Sport, and looking ever so guilty. After questioning him, he said, "I wasn't tired so I was going to look for free tractors." He has a fascination for tractors and recently found a tractor magazine he spends hours poring over. Since I was tired, I decided to accept his explanation and go to bed.

The next day Dean and I asked him a few more questions, and found out that this wasn't the first time he was out of his room in recent days. One of Joseph's chores is too sweep the hallway, making it easy for him to loosen the alarm, then all he had to do was unplug it on his way to bed at night. Turns out that the other night he sneaked out of his room, crept down the basement stairs and crawled out the window. He chose the window because he didn't want us to hear the outside door squeak, he then went to the shop and rode his bike for awhile before coming back to bed...and we were none the wiser. This folks, is why parenting a child with FASD is so challenging - you never know what they will do! At first we were a bit skeptical about his story, but he stuck to it and the details never changed, so we had to conclude he really had gone out and ridden his bike, while we slept totally unaware. Doesn't give one a very good feeling to know your 10 year old can get out of the house  at night without your knowing it! My mind made a few frantic loops, thinking of all the things that could have happened...he was in the shop, a place he is not allowed to be without supervision due to all the tools. He could have brought anything back into the house with him and done all kinds of damage, he could have wandered off into the woods, he could have hurt himself and we wouldn't have known he needs help...Thankfully he simply went for a bike ride and made it safely back to bed!

Monday, September 17, 2018

Willfulness Or Brain Damage?

Having a child with FASD makes maneuvering sibling relationships challenging. We are trying to teach our children that  Joseph's behaviors, which bug them to no end, are due to brain damage not a fixed desire to irritate his siblings. Sometimes I wish they would simply show him a little more grace, that would make being the mom would be so much easier! But then I remind myself of how often I fall short of responding with patience and understanding, after one too many challenging interactions with him.

After an exceptionally challenging day, Dean said, "I think Joseph tries to be kind and respectful, but he falls so far short of it that it is difficult keep in mind that this is brain damage, not will full behavior."

I KNOW it is brain damage and I KNOW he can't help it, but when a child's behavior drains a family of their emotional energy, it is hard to remember that. Sometimes I totally forget and when I begin seeing his behavior as will fill, bad things happen.

First, whether I like it or not, Joseph regulates off of me. He relies on me to maintain his equilibrium and when I am irritated (even silently irritated), with him he falls apart and tries to regain my favor by doing things for me.  Anyone who has a child with FASD will know that these children often struggle to anticipate their own needs, much less someone else's. Having to exert brain power to meet another's needs, means they have that much less to use on themselves which means more accidents, more messes, more tears... all in the name of trying to regain my favor. So who is at fault here?

Joseph adds his three cents worth to every conversation, unless we specifically tell him, "No more talking!" Then he sits and sulks because, "You never let me talk!!!" Which of course isn't true. After he has butted in and made multiple comments which may or may not have had anything to do with the subject being discussed, it is easy to become frustrated. To complicate matters, the more stressed he is, the more he talks. So if he senses that we are getting upset with his ceaseless chatter, guess what he does? You guessed it, he talks even more. I need to remember this is impulsiveness and/or dysregulation, not will full behavior, but it is so hard to remember when it happens so often. 

He will do whatever anyone tells him too (unless it is in regards to chores). If I send him on an errand, and Lia stops him and tells him to do something else, he will drop what he is doing and do her bidding. I will find him wandering around in another part of the house and ask him what he is doing, his reply, "_________ asked me to help fix this toy so I went to the basement to get the things I need." Never mind the rule that I need to see him at all times, never mind that I told him to come right back....everything goes out the window when someone asks him to do something. Yes, we are working on his siblings in this area as well, because they know they are not to be telling/asking him to do things without permission. Confronting him does no good. Yes he knows what he is supposed to do. Yes, he knows that he is not to run off and do things without permission, but in his mind he isn't in the wrong because ________ told him too and he was only trying to help. I need to remember that he has a kind heart and isn't trying to be disobedient. 

All this sounds so simple. Remember this is brain damage, and the child cannot help it...until you take into consideration the fact that he does have the ability to misbehave intentionally. And when that happens, if you do not give a consequence, his negative behaviors will increase tenfold. For some reason, he seems to think that if mom and dad slack off and give him an inch of leeway, they won't mind if he takes a mile of freedom. For this reason we have to consistently enforce our rules and boundaries, while taking in to consideration that he has brain damage and what appears will full, may be anything but and he will be crushed if we give consequences. If it is will full and we let it go, however, our problems are only beginning. 

For example, he has trouble regulating the quantity and appropriateness of his words when we are in the presence of others. For this reason, we have implemented a rule when in the presence of strangers, "Answer their questions, but then no more words." He is able to do amazingly well most times, with frequent reminders. The other day we had a visitor and I reminded him of the rules before she came in the door. He nodded (when he knows exactly what is expected of him, he can often relax and do well in situations that would typically increase his anxiety). He answered her questions appropriately, I smiled at him to reassure him he was doing well and then he sat and quietly listened to the conversation. Suddenly he piped up, "I drove over a kitten with the trike once and Tristan had to dig a hole and bury it!" I will leave you imagine the rest. 

Knowing Joseph's impulsivity, I was going to let the incident pass without further comment because we all make mistakes and it appeared that was all it had been. Except his behavior proved otherwise. After our visitor left, Dean talked with Joseph, explaining why we have rules and the necessity of obeying them. That chat cleared up the air and he went to bed happily. It is so hard to know when to hold him accountable and when to chalk it up to brain damage. 

*By the way, the cat story was due to confabulation... we did have kittens once upon a time, and I accidentally backed over one with the explorer, which was the end of poor kitty. He remembered bits n piece's and filled in the gaps with, what to him, was a plausible explanation.

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Saturday, September 8, 2018

Trauma - The Gift That Multiplies

Adoption agencies portray adoption as something joyful, something that fills a void in the hearts of parent and child, a blessing without end. What they fail to address is TRAUMA and while I understand why, I don't think it does anyone any favors to pretend that trauma isn't real.

For one, there is a desperate need for homes for the many hurting children in this world, why jeopardize their chance's of a loving home by informing prospective parents of the affects of trauma? 

Two, many people (including myself at one time) cannot fathom how a sweet, cuddly baby could be so affected by 9 months in the womb. Surely the love poured out upon this child, will overwhelm any residual affects of trauma. Or, if you adopt an older child, you think, "Surely he will be so glad to have all his needs met while in a safe loving family, that his past will fade from memory." 

Three, there are adoptee's who are doing well, those who are secure in their adoptive home's, those who are thriving and bettering the world around them, causing people to think, "It is obviously a matter of loving the fear out of the child combined with successful parenting," so they really wouldn't listen to the words of warning concerning trauma.

Then one day they wake up and realize:
- trauma doesn't just go away
- babies adopted at birth have trauma, sometimes so severe they are unable to bond with anyone.
- the child you adopted still yearns for his birth parents to love him and you, the adopted parent, can NEVER fill that void.
- you can pour love onto your child 24/7 but if he views you as the nurturing enemy, love will never fix the hurt he feels.
- the rage he feels towards the pain he experienced, whether real or imagined, has to be directed at someone and that someone is you. Sometimes it seems as though he delights in hurting you and your heart breaks, breaks, and breaks again until you wonder if it is even possible to find healing.

So you go seeking for advice which you will quickly find is available everywhere, even strangers will feel free to offer their thoughts when your school age child is having a meltdown in public. The second thing you will find is that the advice so freely given typically isn't what your child needs.

You know that punishing doesn't work, your child has already been through tougher things than anything you can dish out. 

Taking privileges doesn't work either, your child lives in the moment and he will be dreadfully upset with whatever you have taken away, but the next time he is faced with making a similar choice he won't stop and think, "Last time I did this ________ happened so I had better not." No, 9 times out of 10, he will repeat the same action.

Explaining why certain behaviors are inappropriate doesn't help for one simple reason, the child is acting this way due to trauma, and logic is useless in the face of trauma.

If you have a child with severe trauma, chances are no matter what you try regarding consequences will work, rather it will only serve to drive the child further away, because consequences only work if the child has the ability and desire to form relationships. You cannot punish a child without first having his heart and for many children, allowing an adult access to their heart is simply too risky because of one thing: TRAUMA.

You have to first connect with your child and that is one thing a traumatized child will fight against at all costs. Why? Because to them connection = pain. Why get close to someone only to have them leave? Why allow yourself to care about someone only to have that person run over your already broken and hurting heart? Why risk the pain? 

Then there are children who, due to their experiences prenatally or as a newborn, cannot bond without intense therapy. This may be because they either never had the chance to bond in the days and weeks after birth, so that part of their brain didn't grow correctly, or they endured such difficulties while in the womb; be it from drugs, alcohol, prescription medication, or maternal trauma, that their brain has been permanently damaged, making it extremely difficult if not impossible for them to bond.

Trauma is real folks, it is the gift that keeps on giving. Traumatized children can easily create traumatized families where chaos reigns. The hardest things about it is that there is no one cut and dried "cure" for trauma. A child who has been abused will need different therapy to heal than will the child who suffered prenatal exposure in the womb. What works for one child, may be the exact opposite of what a sibling may need. Trauma parenting is hard it may take years to see result's, there are days when you will want to throw up your hands in despair....days when you WILL throw up your hands or fall to the floor, but remember, your child needs you, even if he asks for it in the most unloving of ways. If there is one thing consistent about a traumatized child it is this: The child desperately needs his parents to be strong and his parents desperately need a village of support so they are not overwhelmed with the task before them.

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Thursday, September 6, 2018

Changing Ones Perspective - From Stressed To Blessed

Today was pretty awful, no change that, it was spectacularly awful. The girls were scrapping before they were even out of bed. Kiana has been dealing with some major anxiety since I got sick. She just knows I am going to die, so she has upped all her survival skills. Think lying, manipulating, pouring on the charm with people outside the family... All things that rear their ugly heads only when her past trauma comes knocking. She told Dean she is treating me so badly so it doesn't hurt as much when I die. Dean reminded her that no one who loses a loved one ever regrets the love and kindest they showed that person while they were still on earth. Last night we had a long chat with Kiana and I thought we had things cleared up. I should have known better, rationalization is not something the traumatized brain responds to.

After a chaotic breakfast we settled in to do our school work, and Joseph promptly flipped out over his math. He successfully completed third grade math last year, so I naively assumed he was ready to progress onto fourth grade. He wasn't, and math has been the source of many chaotic moments. Originally I blamed some of it on "summer brain," but in reality it is more than that. Due to FASD, he really needs to be in school year round to retain what he has learned. I cringe at the thought however, because I know full well how he would feel about that. Anyway, the first sign that something was wrong were the huff's n sighs coming from Joseph's corner of the kitchen table. Then he began verbalizing his displeasure and it went down hill from there. I realized his brain had gone too far down the FASD trail to do math, so I gave him another subject, something that sometimes works. He was having none of it though, because he wanted to do math, until I gave him the book, at which time he didn't want to do it. Books, pencils and words were sailing across the room, realizing I couldn't calm him, I put him in the shower fully clothed. For some reason, cold water will stop a meltdowns in it's tracks, he will go from screaming, kicking, hitting and throwing things, to smiling and telling us about his latest idea. Often he will stop mid scream, give us a big smile and that quickly the storm is over, except today it wasn't . Nothing helped so I put him in the pool where he swam several laps before calming down. Once back inside though, chaos resumed so I sent Dean a S.O.S. via text, essentially telling him we need professional help. He called me and suggested I put Joseph to bed with his stuffed puppy, Sport, and his weighted blanket. I did and peace ensued..... Until Kiana kicked up her heels.

Poor girl, in addition to her anxiety I am convinced her PANS is flaring again, or is it hormones?!? She melted down with a show that put Josephs meltdown to shame. Her high pitched shriek told me this wasn't just an, "I am upset with Mom," fit, it was brain inflammation. After trying all my tricks, none of which worked even the slightest bit, I took her out to the pool and had her swim laps. I texted Dean, "same pool, different rager." 

Joseph can't yell while swimming (the children can easily touch bottom, but it takes all his concentration to swim) big sister had no such problem, and the woods, and my poor ears, were ringing. I sat on the deck praying, asking God why? Why do my children have to suffer brain damage? Why do I have to home school? Why do they have to constantly face new threats to their security? At the same time I was thanking God that we live in a long drive and all our neighbors understand the circumstances surrounding the epic meltdowns that occur.

Eventually Kiana calmed down, we had lunch, Joseph was smiling again, and it was finally time for our quiet time. I sat down to sort through my feelings, read my Bible and pray because while the storms of the morning had calmed, they were still hovering on the horizon and I knew I needed to get myself grounded. I was helping Lia work through an issue when the dog started barking. A vehicle was parked in our drive. The driver had a stack of documents on the seat and he was clearly dressed up, funny what you notice when you are on high alert,  my first thought was, "Someone heard all the screaming and reported us!" Now who is being irrational?!? I quickly went over the things to remember even CPS comes knocking and typed up a text to Dean that read, "If I call you in the next moments answer ASAP!" Suddenly our answering machine picked up and I heard, "I am ______ from pest control, I am sitting in your drive, can you please get your dog?" I suddenly realized Kobi had been frantically barking all this time. I felt my heart stop it's frantic beating and all my frustration of the morning melted away. Suddenly, my overwhelming morning wasn't so overwhelming. The rages, hurtful words and actions no longer bothered me..... after all, CPS was not knocking at my door and in light of what I feared moments ago, I can handle whatever my little people dish out as they sort through trauma and deal with their limitations due to FASD. 

Perspective makes all the difference!!!

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Friday, August 31, 2018

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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Tuesday, August 14, 2018

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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Wednesday, August 1, 2018

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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Monday, July 23, 2018

Finding Success In Parenting Children With Social, Emotional & Behavioral Disabilities - Living With FASD

We have many boundaries in place for Joseph. These boundaries keep him safe, help him thrive in a confusing world and if I am honest, they also help us hang onto our sanity during the rough moments. These boundaries are pretty much unspoken. His sibling's don't look down on him for things like, remaining in line of vision, because we don't relate to them as a punishment for bad behavior. Sometimes I can even forget how vigilant we are, until someone makes a comment or begins asking questions.

Recently a neighbor asked, "Is Joseph still around here? I don't see him outside very much." First, let me say that he does spend a great deal of time outside, only he is behind the house in his play area where this neighbor cannot see him. When she stopped by he was already in bed for the night, as he needs more sleep than his siblings. I explained that a 7:00 bedtime is what he needs to thrive, and yes, he is still here. "He needs Dean or I to help him self regulate, which is why you don't see him running into the woods to play by himself," I concluded. She was silent for a moment then said, "The poor boy!" I was a little surprised at her comment as she is very familiar with special needs similar to those Joseph has, but it got me to thinking. 

If you have followed my blog for any length of time, you know that I struggle with the whole boundary thing. Of course our entanglement with CPS over Braden's care did nothing to alleviate our fears, because once you have gone through an investigation, things look very different. You realize you simply cannot be too careful; err on one side a wee bit too far, and things will come crashing down with devastating consequences.

I had to remind myself, "What is my responsibility as a parent?" 

#1. Keep my child safe. If he will go with a random stranger at the drop of a hat, then I must keep him by my side. If he will do or tell anyone what he thinks they want to know, again, I need to be with him at all times. If he has zero self regulation, and will unintentionally hurt someone or push them beyond their comfort zone, what is my responsibility? It isn't his fault his brain is damaged in this area and no amount of talking, therapy, etc. will "heal" him. We need to provide safe guards to protect him from himself.

#2. Help my child succeed. People with FASD have many hidden disabilities, and weaknesses in area's that you or I don't even think about. It isn't their fault. Joseph is successful, when we provide the boundaries and safe guards to help him succeed. This means putting him to bed at 7:00 because he needs ALOT of sleep, without it, he completely falls apart and the whole family ends up frustrated. People often tell me, "But that isn't fair to him, doesn't he get upset?" Of course there are times when he grumbles about it, but over all, he is much happier if we stick to his routine, because he knows he feels better.

#3. Make my child feel loved. Every child needs rules/boundaries in order to feel loved, even though I am sure every child would adamantly deny it! When we force Joseph to "act like a 10 year old," he doesn't feel loved because he inevitably falls short of our expectations. If we parent him like a preschooler, he thrives and feels loved and secure in that environment.

As parent's we often struggle with the fear of failure, especially when parenting children with social, emotional and behavioral special needs. There are many parenting models out there, therapies, diets, supplements, and the list goes on, but at the end of the day who is responsible for the child's well being? The parent of course! If the child is still struggling despite all the intervention's you have put in place, you will naturally be tempted to feel like you have failed your child. Smashing yourself into the rocks of guilt, won't help you or your child, instead ask yourself:

- Is my child safe?

- Is my child thriving/succeeding?

- Does my child feel loved?

If you can answer yes to these questions, then you have given your child a great gift and you are not a failure, even though those who catch a brief glimpse into your chaotic, restricted, lifestyle would likely claim otherwise!

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Tuesday, July 17, 2018

From The Inside Looking Out - When FASD Is Hard To Explain -Living With FASD

I have recently begun following Beating Trauma With Elisabeth Corey  and love her many thought provoking posts and comments. If you are a victim of trauma. or parenting children with trauma, I urge you to check out her FB page. She works with adults, but her writings offer insight into why our children struggle in particular area's. As I have said before; FASD is a form of trauma due to both the prenatal exposure the child endured, and going through life with this particular form of brain damage is an open invitation for further trauma to occur.

When I feel frustrated with someone who obviously does not get Joseph's disability and through their interaction with him, are compounding the problem, I try to place myself in their shoes. What must the situation look like to them? Here is a child who's parents have obviously placed severe boundaries in his life, they also monitor his speech and actions,while insist on being by his side at all times. For all intents and purposes, the parents appear to be both coddling him while not allowing him to have a social life. When someone comes to me in what feels to me like a defensive manner, and begins questioning our parenting of Joseph, I am slowly learning that they won't be able to understand no matter how much I explain and I must remember that, "From the outside looking in, it is hard to understand."

The flip side is when you are on the inside looking out and you know if you could help people understand that you aren't being mean to your child, nor are you coddling him, you would have a great deal less stress. If only they could understand that you are merely providing the supports and boundaries he needs to both thrive and survive, and that if it were at all possible you would be only to happy to let up on them. I don't think you can explain how draining it is to keep a constant eye on your child, to think of the 101 things he could get into even though you have been super vigilant. Joseph has the uncanny ability to get into trouble or hurt himself, even when he is in line of vision. It is due in part to his lack of cause and effect, along with dysmaturity which means that while he is the size of a 10 year old, he is developmentally between the ages of 3-5. He is tall enough to reach the counter tops, the stove etc. but he can't be trusted not to turn on the stove or taste a mouthful of spices. 

How do you explain that while my son can speak fairly intelligently on certain subjects, he has no idea if a topic is appropriate, nor when it is time to discontinue the discussion. He will talk to you about any given subject for as long as you listen. The more you engage him, the more he talks and the bigger the fall out will be. How do you explain that interacting with my child causes him to become hyper vigilant without sounding like an over protective, paranoid parent? The brain power needed for each interaction, rapidly uses up the meager store he has on any given day. This means he won't have enough brain power to regulate his emotions, follow instructions, or even enjoy the remainder of his day. When he becomes over stimulated, his cortisol goes through the roof and he is unable to relax enough to sleep, resulting in still more tears. 

How do you explain the grief you feel when you see your child mourning his inability to interact with his peers? I often hear, "But ____________ is 10 and he can ___________, so why can't I?" He cannot understand that he has a disability, he only knows that others his age have privileges that are light years beyond what he can enjoy. 

And then there is the guilt that you have to work through in order to be the parent your child needs. 
You feel guilty for getting frustrated with his ceaseless chatter about nonsense. 
You feel guilty for resenting this disability that has turned life as you knew it on it's head and will continue to be foremost in any family decisions in the future. 
You feel guilty for getting frustrated with your child, because sometimes that stress presents itself in ways that make you wonder who you have become.
You feel guilty for insisting that your child have a small life even though it is in his best interest, because you know keeping his world small, means he is easier to care for.

All these reasons, plus a host of others make it incredibly difficult to explain what it is like to parent a child with FASD and from the inside looking out, it would make all the difference if only you could. 

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Tuesday, June 26, 2018

Sensory Overload - Living With FASD

I am the type of person who needs to personally understand something before I can fully comprehend how to work with the issue at hand. FASD used to, and still does if I am totally honest, cause me no end of frustration. I understood the diagnosis and understood how it affects people, but I could not personally relate and so had a hard time being empathetic. I used to pray, "God, please help me to understand." Ever hear the quote, "Be careful what you pray for, because it just might come true?" Well it happened for me. No, I didn't get FASD, as that isn't physically possible, instead I experienced antidepressant withdrawal, and suddenly I could intimately understand exactly what Joseph goes through on a daily basis. While the reason behind the distress is different, the symptoms are the same.

Joseph has always shut down when life became too stimulating. Again, I understood why, but at the same time I couldn't grasp what it is like for him. Now I can. 

I quickly begin to experience sensory overload. When you are driving down the road, your brain filters what you see and hear. If there is something new or different you will notice it, but the house's won't jump out at you as new information each time you drive past. Withdrawal has deleted that filter for me so everything hits me at once. The bright sun, the curve of the road, the hum of the tires, the birds singing, the bright flowers... they all pop out at once. Plus I need to maintain a certain speed, be aware of the vehicle's around me and remain alert for things like animal's crossing the road. All this input makes my brain tired and I stop comprehending the information that is entering my brain. I misread signs, misunderstand my children, and while I can follow my GPS, I cannot follow written directions. 

It can be especially bad when I go to the grocery store. There are bright lights, displays intended to catch one's attention, music, people talking and cash registers beeping. It overwhelms my brain. Then I am supposed to follow my list and make wise decisions concerning the things I buy. If I am by myself I can usually keep it together, but if I have a child along, I am usually the one who has a mini meltdown. 

The fatigue that comes from sensory over load is a horrible feeling, one I will avoid at all costs. I starts with my throat feeling sore, then my eyes hurt, my heart begins to race, my head ache's and my ability to process information goes down to about 25%. This sensation comes on without warning. I can be in mid conversation and suddenly the sick feeling hits and my brain shuts down. When that happens it is game over. There is no taking a few moments of down time so my brain can refocus as it takes at least one good nights rest before I feel better.

Now imagine if you were a child and mom was saying, "Get your shoes, make sure to get your tie shoes and grab a coat as well because it is going to be cold outside. When the child freezes or sits on the floor and begins crying inconsolably, it is so tempting to get frustrated. Now I can personally understand all that the poor child is dealing with. He is anxious because he knows mom has given a command and he is afraid he will get it wrong. He doesn't want to miss out on anything and it is just too much. I used to think that my children have to learn to do things for themselves or they will never learn. But for the child with processing disorder, FASD etc. do not use those moments to teach, wait until a time when he is calm and able to process information, those are teaching moments.

Our children do not want to be this way. Their brains are simply flooded by sensory overload and they cannot follow directions. When the brain is overloaded, things that you typically do automatically suddenly require intense concentration. Things like starting a vehicle, closing a coat, placing an online order, or scheduling an appointment take actual thought and brain power.

Sometimes when I ask Joseph a question, he gives me a blank look. I used to wonder how one could forget something in a few seconds. Folks it is entirely possible. Lets say I put my child's book away and a minute later he comes and asks for it. I reply that I haven't seen it and he says, "Mom, I just saw it in your hand!" He is sure to get the blank look from me, because I honestly cannot remember seeing the book.

Joseph struggles with finding the correct word for things, or he would suddenly forget what he was talking about and begin telling a different story mid sentence. Now I am the same way. I will be telling Dean something and suddenly my brain goes blank. I honestly have no clue what I was just talking about and it is so frustrating! 

This morning we stopped at the library and the siren's on a nearby pole were wailing. It took all my concentration to get out of my vehicle, lock the doors and walk into the building. It felt like that siren was inside my brain, using up all my mental energy. When I stepped inside the building and the noise diminished, I felt a physical feeling of relief sweep over me. Joseph was with me and was struggling as well and it hit me, "This is what he has to deal with every day!" For me, the intensity waxes and wanes as I go through each med drop and I have the hope that within a few years, my brain will have recovered, but for those with FASD, there is no such relief in sight. These people need our understanding, especially when they meltdown from sensory overload.

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Monday, June 18, 2018

When The Gap Between Chronological Age And Ability Continues To Widen - Living With FASD

Joseph is in another one of his frustrating phases, although if I am honest, I am not sure who is more frustrated, him or I.

Joseph has always had an amazingly creative mind, he can make tractors out of a twist tie, paper and Lego tires. He can turn dust bunnies into animals and play with them for hours. The problems begin when he wants to make "real things," but lacks the ability to understand why his idea's won't work. He is currently upset because he cannot make a computer out of a broken calculator. Once, in an attempt to keep his brain occupied, we bought the book How Things Work, by Neil Ardley. Our so called brilliant idea backfired though, because now, 2 years later, he wants to make the things he reads about in the book and his "projects" never turn out like he envisioned which results in a meltdown.

This morning he took his calculator apart and became upset when his computer didn't work like the one in his book. I tried explaining why his idea wasn't feasible in an attempt to help him understand. I know, I am a hard learner but I keep hoping that someday he will be able to understand. Here is our conversation:

"Joseph, you cannot make a computer out of a broken calculator."
"Yes, I can! The book says all you need is a wire and a battery"
"Yes, but you need the right kind of wire, and one that isn't broken. You cannot build a computer out of something that is broken."
"If you would give me something that you don't use but it still works, I could make something."
"You need the correct parts. Even dad (who in his mind can do anything) cannot take an engine apart and make a chainsaw out of it, because he wouldn't have all the exact parts he needs."
"Yes, but I have my calculator screen and that is like a computer screen n I have the buttons. All I need to do is hook a wire to the buttons and then they will make numbers on the screen."
I finally came to my senses and tried a different tactic. "If you want to build things, make them with wood or Lego's, boys who are ten can't use machine's and make electronic toys."
He sat there with the most crushed expression and I was once more aware of how much FASD has robbed him.

Lest you think I got my point across....he is currently making a solar panel out of the calculator. I am bracing myself for the meltdown that will come when he realizes his solar panel doesn't work.

This gap between his age and his abilities is continually growing. He see's other 10 year old's doing things and he wants to as well, not realizing he doesn't have the mental or physical capacity to perform the same activities. Letting him try and fail, doesn't work due to a lack of cause and effect. 

We tried different kits including electronic connectors and Lego kits but he cannot follow the directions. Helping him build something doesn't turn out so well either as he has his own idea's about how things should work and gets upset when you tell him differently.

Recently he has been recalling things Tristan did when he was 10 years old. Unfortunately, he has a surprisingly accurate memory in this area and deems it unfair when we do not allow him the same privileges and responsibilities. In light of that, we have really begun hammering the fact that age does not equal privilege, rather responsibility does. So when Tristan was dreaming of the day he can get his drivers license, Dean reminded him, and all his siblings who were listening in, that just because you are legally old enough to drive does not mean you will get a license. We have to trust that you will obey the rules, drive safe and make good choices, before we will take you for your license. The phrases, obey the rules and make good choices are ones our middle two children are well acquainted with. Our hope is that, if we continue drilling this concept maybe by the time they reach the age where their peers are getting more responsibilities, it won't come as quite a shock that mom and dad aren't suddenly going to give them the freedom they so greatly anticipate.

Thankfully, I know this phase will pass as they always do, but in the meantime we will batten down the hatches, wait for the storm to pass and hope the damages aren't too great, while hoping against hope that some of what we are attempting to teach sticks! 

I would love to hear how you help your child cope with the gap between his age and the privileges other children his age have.

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Wednesday, June 13, 2018

Walking The Walk Is Harder Than Talking The Talk - Living With FASD

Many people with FASD can, "Talk the talk, but cannot walk the walk." 

For instance, let's say I tell Joseph he may play in his play area, but he has to stay there. He will agree, even repeat the instructions back to me, but 5 minutes later, he is out in the shop. I ask him what I told him to do. 
"You said I may play in my play area." 
"What else did I tell you?" 
"You said I have to stay there."
"So why were you in the shop?"
"Lia wanted me to get her bike."

"Who do you obey, mom or Lia?"
"I must obey you."
We go over the rules about obeying mom, he agree's to them, apologizes and .... guess what happens? You guessed it, he is soon off on another deed of kindness. Once more we go over the rules, he says them back to me, only to repeat and repeat this scene in a myriad of ways multiple times a day.

Another rule we have is, when we are away from home, he is to play quietly. Otherwise he will interrupt people to offer bits of advice that aren't relevant to the conversation. Some people smile and nod their head at his comments, others engage him which only increases his chatter, which in turn increases his dysregulation, Before we visit someone we go over the rule's, he can relay them verbatim, using the exact word's and phrases we use, but without fail, he doesn't follow through.

When we go shopping, he is to hold onto the handle of the shopping cart. I remind him, he agree's and as soon as I turn my back, he walks off to look at something that caught his attention. "I just wanted to see what it said on the cereal box!" Is his excuse when I reprimand him. "What is the rule when we are shopping?"
"I have to hold onto the cart."
"Is that what you were doing?"
"No, but I just wanted to see...."

I tell him to sit on the sofa and read his new book and seconds later he is off the sofa, looking for Kiana's book because he overheard her ask me if I know where it is. 
"What did I tell you to do...."
"You told me to stay on the sofa but, I just wanted to help Kiana and now you are scolding me for helping!"
"It is kind to help people, but it is more important to obey mom." I remind him for the umpteenth time.

Joseph does a lot of talking as I shared in this post entitled: Incessant Talking - Yammering - Excessive Verbiage. When we are driving he tends to verbalize everything he see's, which in turn triggers a memory of something he heard or saw, which reminds him of something he once did. If we don't tell him to sit quietly, he will talk nonstop, something his siblings do not appreciate! We always listen to an audio book or music, because that helps keep his mind busy and he sits quietly so as not to miss out on the story. There are times however, when he simply cannot be quiet no matter how many times we remind him to stop talking. That is when we tell him to close his mouth, look out the window and tap his hands on his knee's. That usually works. The only thing I can figure out is that it is the addition of a physical activity to the command. Again, he can talk the talk, but walking the walk is so much more difficult.

This used to look like blatant disobedience and caused both him and us no end of grief. We gave consequences for disobedience and he felt wronged because he didn't feel he had done anything to warrant the consequences. Once we understood that in order for him to be moderately successful, we needed to provide structure and support, things went better. We no longer give him a box of toys and expect him to play appropriately without getting dysregulated by the toys with lights and noise, instead we give him something like Lego's or matchbox cars. He can have fun and doesn't become so overstimulated he is unable to follow the rules we have put in place.

If you are wondering why we have so many rules, there are many reasons, but basically it boils down to a safety issue. Joseph seems to be drawn to mischief and can get into trouble or hurt himself within moments. If I know where he is, I know he is in a safe place and he won't find things which he can turn into a dangerous object. I know that just because Joseph can tell me what he is supposed to do. But even though he knows the rules, that in no way means he will be able to follow through. 

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Thursday, June 7, 2018

Incessant Talking-Yammering-Excessive Verbiage - Living With FASD

 Incessant talking - yammering - excessive verbiage

If you have a child with FASD, chances are you are very familiar with these terms. Many individuals with FASD process information at a slower pace, some like Joseph, can process things better if they speak the words aloud. On Joseph's "limited cognition days" he tends to voice every thought and opinion that goes through his mind.

For instance, here is a conversation:
"Mom did you know it goes fast?
I do a quick brain search of my own trying to figure out what he could be talking about.

"The one that, umm, it went past the place where we live."
"I don't know what you are talking about Joseph."
"You know, when we were out on the grass it flew over top."
I ask questions, until I can figure out what he is trying to tell me. Sometimes I can get away with a nod of the head and an agreement, but other times he figures out that I am not following and tries to make me understand.

On days when his brain is working at maximum capacity, we have very few of these discussion's, when we over draw on his window of tolerance, they are nonstop. Usually after multiple conversation's I say, "Joseph, my ears are tired, no more talking." Thankfully he isn't offended, but typically within moments he will start, "Mom, did you..oh that's right I am supposed to be quiet." Not a minute later he will pipe up with another comment. I have found when this happens having him do about 20 jumping jacks every time he forgets, helps him remember. 

Today is one of those excessive talking days. To compound the problem, he reads/hears/see's things and interprets them incorrectly. He was looking at a Uline catalog, one of his favorite pass times and said, "Mom, did you know W@lmart and Uline are are trying to get the whole Amazon thing going again because the Amazon thing wasn't very good."  He showed me where he read this choice bit of information and that is not at all what the article said, but that was his take away, he won't forget it either. I just nodded my head and agreed rather than try to explain what the article really said because that would only lead to more question's, more words and more misunderstandings. And I wonder why my brain gets tired!

If anyone has tips to limit the over production of words on days when the brain has limited functioning, I would love to hear from you! Also appreciated would be tips to help siblings understand and thus be a bit more gracious. I often hear a sibling say in a desperate tone of voice , "Joseph, please stop talking!" 

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Friday, June 1, 2018

When The Window Of Tolerance Slams Shut - Living With FASD

In one of my support groups, a woman referred to something called, "The window of tolerance." An individual with FASD is easily overstimulated and when that happens, things go down hill. As long as you help them stay regulated, don't require more than they can do, and provide the necessary structure and supports, things go well.

We know that, we have known it for years, but there are always those times when despite your best planning, things happen and a fall out ensues. That happened to us this week. Dean and I had a service to attend, a service where emotions were sure to run high, and we didn't have a babysitter for Joseph. Since he regulate's off the people around him, we knew we were in for trouble because even though he was with us at all times and could regulate off of us, he would inevitably pick up on the heightened emotions around him. We decided to take him along, grit our teeth and deal with the fall out. 

We had a spectacular fall out. You would think after ten years we would be prepared, but somehow we are still surprised with the intensity of dysregulation. 

If the sun would have been shining yesterday things would have gone better, but it was dreary and Joseph's play area, which is little more than a glorified dirt pile, was muddy. He is currently trying to grow a garden of weeds and grass, but everything just dies. Keeping in mind that he pulls the plants up by the roots, shakes the dirt off, plunks them in a hole he dug and covers them with dead leaves and debris, it is little wonder things don't grow. But since it keeps him occupied, I won't complain. Anyway, he thought his garden is dying from lack of moisture, so he dug a ditch to funnel rain water to said garden. This project keeps him occupied for hours. He gets utterly filthy, but he is happy and safe.

Since his play area was off limits, he decided to ride bike. He rode a couple of half hearted loops around the drive, grumbling and complaining about the mud and everything else that displeased him. He thought he heard it thunder and said he wants to put his bike in the shop. I gave him permission, it is out of my sight and there are many things he could get into out there, thus the need for permission. He came inside growling and stomping because he is bored and doesn't know what to do. I gave a few suggestions which he promptly discarded, flopping on the sofa instead. A minute later he said, "I want to ride my bike!" I reminded him that I had given him permission to ride, he wasn't happy about it and then asked to put it away. "I don't care, I want my bike!" Now I could have left him go ride his bike, but I knew that in his current frame of mind, that would be asking for trouble. As it was, he was in the house where I could keep an eye on him. I left him yell and sob about his awful life and how mean I am because I won't let him ride his bike and was reminded again about the window of tolerance. We over drew big time the previous day and now we are paying for it.

His behavior was similar to that of an over tired toddler. He was grumpy and tearful about everything, nothing pleased him. What he needed was a good nap, but since he hates naps "cause they are for babies," he couldn't regroup. He couldn't obey, I say couldn't because his brain literally couldn't follow directions enough to to obey a command. When asked a question he couldn't answer it, but he had answers for any question directed at a sibling. He didn't respect his boundaries which are in place for his safety, so I had to tighten them which only made him more upset. He heard conversations not meant for his ears and drew conclusions, which caused further dysregulation.

Sadly, once the window of tolerance slams shut, it takes days, weeks and sometimes months, for the individual to be able to regain his previous level of tolerance. I feel bad for Joseph because while he feels all the "symptoms" he doesn't have the ability to understand what has happened. All he knows is suddenly his world is out of whack and his parents aren't letting him, "Do anything I want," as he puts it. He thinks we are just being mean, poor boy. 

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Wednesday, May 23, 2018

The Other Huge Trauma In My Life - Antidepressant Withdrawal

I don't often write about the other "huge trauma," in my life...that of antidepressant withdrawal. Sometimes I don't know which is hardest, parenting children with trauma/brain challenges or trying to manage my own physical/mental issues that come as I attempt to taper off this brain altering medication.

I realized I needed to get off this medication when I found myself needing multiple other prescription medications to manage the side affects caused by Effexor. I talked to my doctor about it and he said, "No problem." At the time I was on 300 mg and he told me he will prescribe 150 and see how it goes. I didn't feel to bad with that drop, but when I dropped to 75 mg. I felt horrible. I remember telling Dean, "Don't leave me," because I didn't trust myself. I knew my brain was not functioning correctly and the thought's I was getting due to my intense physical pain scared me. I told my doctor how I felt and he brushed me off. He insisted that the lower the dose the less withdrawal I would have. I didn't trust him anymore and began doing my own research.

I found supplements that were helpful as antidepressants reduce your adrenal function. I also found a group who recommends a 10% drop every four weeks at the most. To achieve this, I bought a scales and weighed the teeny beads inside each capsule. Tapering tends to make your body super sensitive and eventually weighing the beads wasn't precise enough so I found a compounding pharmacy who was willing to make the exact dose I needed. I have been tapering for 2.5 years and at the rate I am going I will have several more ahead of me, so next week I am going to try a bigger taper - 10%. To say I am terrified is putting it mildly. The anxiety is nearly getting the best of me this week because I know what I have ahead of me.

People often ask what withdrawal is like. I find it difficult to explain but I will give it my best shot here.

- Brain zaps - It literally feels like bolts of electricity are flashing through your brain.
-Head ache's - They feel like a vice and cut your ability to think or reason. Some people sleep with ice packs to alleviate the brain pressure.
-Insomnia - Wide awake during the night with racing thoughts and severe fatigue during the day.
-All manner of gastrointestinal issue's. You name it, you will have it.
- The intense desire to crawl out of your skin. For me, this is one of the worst. Clothing hurts, combing my hair is painful, my skin itches, but I can't alleviate the itch.
- Chills - my hands and feet will turn white/purple and be icy cold. My inner core is freezing and even a hot shower does little to warm me. My family is used to seeing me wrapped in blankets, sweaters and drinking hot tea.
- Then there is the psychological aspect - depression, anxiety, suicidal thoughts (Yes, I know how to handle them and when to seek help) severe anger and irritability.
- Inability to carry on a conversation, extreme forgetfulness, inability to make decisions (my poor husband gets so many phone calls because I cannot make even the most basic of decisions). I have been known to walk away in the middle of a conversation because my brain suddenly "forgot" I was talking to someone.

There are times I am tempted to just quite taking my medication and suffer through the ensuing pain, but the stories of people who have done this and are living with these, and worse symptoms years down the road, hold me back. I still have at least 2 years ahead of me and sometimes I think I can't do it, listening to these stories puts that time frame into perspective. Last night Dean told me to look back on the 2.5 years I have come through and focus on them which is helpful, however I know the further you taper the more intense the withdrawal symptoms and that is not at all comforting!

The frustrating thing is, that the pharmaceutical companies tell doctors that this medication, and others like it, only cause minimal side affects in a select few patients, or that if the patient does have withdrawal that means he needs the medication. 

There is one bright spot though, every time I taper and come through the withdrawal, I can enjoy life a bit more. For so many years my senses were numbed by this medication. I didn't realize it, but now that I am slowly getting it out of my system, the sky is brighter, there is joy in life again....but by then it is time to taper a little more and I go through the whole cycle again. Another plus, I have already been able to successfully eliminate one of my prescription medications, so I will keep pressing onward!

Not all antidepressants cause such intense withdrawal when you try to discontinue them. Only SSRI's and SNRI's have this ability with SNRI's being the worst of the two, and I have the dubious privilege of being on an SNRI. I share this because I know how freely antidepressants are given out (I also acknowledge that there is a place for them) and if my story can spare anyone the pain and trauma me and my family have been enduring these past years, I will be grateful! 

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Monday, May 21, 2018

The Up And Down Mood Cycle Of FASD

Joseph typically has several weeks/months where we can successfully loosen up on boundaries, he doesn't melt down as easily, and rages are few and far between. Then something changes (we have yet to figure out what) and he regresses socially, emotionally, cognitively. We have to keep a close eye on him, always think outside the box because one never knows what he will do, and deal with copious amounts of tears. Nothing is right in his world and everything is everyone else's fault. We hear a lot of, "You just want to make my life hard!"

He just came through his longest good stretch ever. We were seriously beginning to think that maybe home school was the answer to his over stimulation and mood swings. I know, don't laugh. You could say we are hard learner's, but I choose to think we are being optimistic.

This afternoon after his quiet time, I noticed he wasn't moving his shoulders or turning his head. I soon saw why. He had both side's of his neck scratched raw. There were spots with the skin literally scratched off. We have been battling his eczema again. Nothing, not lotion, medication, diet or prescription creams make a difference. His dermatologist, after trying everything, finally agreed that it must be stress induced. What is he stressed about? I have no idea, other than he is on the down side of his mood swings and at those times the neuron's in his brain become tangled and then anything is possible.

I cleaned his neck and put cream on, which made him furious. After he calmed down I told him he may ride bike. He rides in a circle at the top of our drive so I can keep an eye on him. I heard his voice getting higher and more shrill and was beginning to call him in, when he and Lia had a near collision. I finished what I was saying and he exploded, "It wasn't my fault she almost wrecked, I told her to go that way and she came this way instead and now you blame me and make me stay inside while she doesn't have any consequences!!!!" I tried to explain that the near wreck had nothing to do with him having to come inside, but his brain wasn't processing anything I said. I told him to sit on the sofa and read a book, but he came after me demanding to know why he has to come inside when Lia doesn't, cause it was all her fault. I explained that I didn't tell him to come inside as a consequence for the near wreck four more times before my brain kicked in and reminded me that it is pointless to talk. When Big Brother, hearing the insults being thrown my way, offered to intervene, I told him to just let Joseph go, when he is yelling insults it is the best to just let him blow off steam.

Joseph stayed in the family room and yelled at me while I was mixing up meatballs in the kitchen. Everything I suggested was a bad idea, so I ignored him. Eventually he calmed down and decided to read his book, although the huffs and sighs coming from that side of the house told me plenty. I know he still believes that I am being mean to him. This is what is so hard about FASD, their skewed perception and inability to realize that what their way of thinking isn't correct. 

To add insult to injury, this meltdown most likely took a toll on his meager coping ability, so we will have to implement even firmer boundaries for the remainder of the day which will make him even more furious. When he is in this mood, anything and everything is wrong. Nothing is his fault, no one likes him, and he is sure everyone just wants him to have a bad life. Sometimes I shudder when I think of the coming years. He is still smaller than me, I am not afraid of his strength...but for how long?

I am curious, does anyone else find that their child has good weeks/months, then have stretches where they have a much more difficult time coping with life?

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