Saturday, August 19, 2017

When Mom Perpetuates A Negative Cycle - Living With FASD

Joseph and I can quickly get into a negative cycle. Children with FASD want to be loved, they crave their parents love and affection. Sadly, because of the damage done to their brain, they perceive the world differently which results in frustration for them and their parents.

Yesterday was a hard day at our house. I don't know exactly why. It may have been because it was Friday and the children didn't feel motivated to work, maybe it was the weather or maybe we were all bitten by the grumpy bug. Whatever it was, no one was feeling especially loving and kind.

Joseph has been having a difficult time keeping at his school work. I originally planned for the children to do their work in their bedrooms but everyone wants to work at the kitchen table. This is fine, except for the children who are easily distracted by what goes on around them. I tried having Joseph do his work at his desk in his bedroom but his "out of mom's sight, means I can do what I want," style of thinking takes over and very little work gets done. This means I am constantly reminding him to keep at his work, which frustrates us both.

Since Kiana's Lyme diagnosis, she and Joseph have been pretty much on the same level socially, emotionally and behaviorally so Joseph has come to view her as a peer versus and older sister as he did two or three years ago. As a result, they are both doing the same level of work and he keeps an eye on how fast she is getting through her books. Rather than work faster to keep up, he melts down and refuses to co operate.

These are just a few of the things that were making me feel a tad bit frustrated with Joseph. I knew better and as his mom, I shouldn't have reacted but I did. He sensed my frustration and tried to be extra loving and helpful. This resulted in disaster since thinking for himself taxes his brain. He tried to take care of Lia by helping her or telling me when he thought she was misbehaving. Of course whatever he was supposed to be doing wasn't getting done because he was using his brain power to "take care of Lia."

If I dropped something, he was scrambling or falling off his chair in his haste to pick up the object for me. Which was thoughtful but if my pen is right by my chair I can pick it up in less time than it takes for him to get off his chair, make several attempts at picking it up, climb back on his chair and find his spot in his workbook again. I smile back my frustration and we go on.

He kept popping up with wild idea's of things he could build - "Dad could buy me an engine and I could...." Or, "I can get all the rocks out of the yard when you mow and put them in my play area. I could use them to build a rock wall so Kobi couldn't knock it over..." 

He was extra exuberant about everything. When I told him to put the coffee cups away, he bounced up and cheerily whacked them together, breaking one. "Ooops, guess that is one less cup!" He announced cheerily while I gave a deep sigh. I knew he was trying really hard to be happy because he sensed I was frustrated with him.

He offered to do things for me, which was fine except that he failed to complete what he was told to do. He corrected everyone and everything until his siblings lost any semblance of patience with him and sadly, I wasn't far behind.

If I praised him or gave him a smile, he tried to be super helpful and things deteriorated even further.

I knew what was wrong, I knew I needed to get myself back on track before he could function again but due to various things, I was having a very hard time doing that. So we stumbled and bumbled our way through the day. I gave him a good night kiss and sent him off to bed vowing that today would be better. 

As I type this, he just finished his chocolate breakfast cereal and offered me the "chocolate milk" that was left in the bottom of his bowl. "You may have this for breakfast mom!" I sensed he was still trying extra hard to be kind so that means I need to fill his love tank and get him settled emotionally or this day will be no better than yesterday.

I think the reason this behavior gets under my skin so badly is because I know that I am the one to blame. If I can be kind, loving and gracious despite Joseph's challenging behavior, we seldom get into this cycle of him trying extra hard to please me and as a result, making things even worse while I get more irritated as the day goes on.

Thursday, August 17, 2017

Shovels Of Dirt - Filling In The Hole Made By Poor Choices

PANS and NeuroLyme can cause some pretty negative behaviors. When you add in trauma plus other things that have a detrimental affect on the brain, it is easy to see how a child can form some fairly intense responses that quickly become habits.

Thanks to the new combo of antibiotics and supplements we are using to treat her Lyme disease, Kiana has been doing better these past few weeks. She is now at the place where she is tired of the behaviors she has picked up, but they are so entrenched they are her first response to any situation. As her parents we are learning that it works best to give her a redo or coach her through better ways to respond when she lashes out. Prior to this she was unable to process anything we told her once she flipped out on us, so we are rejoicing at this new progress.

All along Dean has been telling her that she is digging a hole with her negative choices, "Someday you are going to have to dig yourself out," he warned, "And it is going to be very hard because you have dug a deep hole." She was in no frame of mind to care, much less work on making good choices. Nevertheless, we reminded her of this from time to time.

Last night we had the same discussion, although from a different angle, she wanted to fill in the hole she has dug but wasn't sure how to go about it. I told her that every time she makes the decision to tell the truth, not lash out in anger or to obey promptly she is putting another shovel of dirt into the hole. "You are going to have to stop and think before you act," I said, "For so long you have been throwing out one shovel full after the next because you were to upset to care about the choices you made. Now you are going to have to be very intentional about filling up that hole."

She was quiet for a moment then said, "If I make a bad choice does that mean I will have to start all over again?" I explained that each bad choice is like throwing another shovel full of dirt out, but each good choice means she put another shovel of dirt back in the hole. "Someday, the hole will be full and then it will be easier to make good choices without having to stop and think.

Sometimes I wonder if God looks down and smiles when I have this type of discussion with the children. So often the things my children and I struggle with parallel each other, sometimes in incredibly sobering ways! As I talk with the children God impresses upon my heart that I must do the same hard work I am asking of my children. Sobering indeed! Other times, I may be wrestling with an issue or trying to make sense of something and as I am talking with a child, the answer becomes crystal clear. It is so much easier to talk the talk than to actually walk the walk!

Saturday, August 12, 2017

Week One Of Home School

School - the place that totally complicates trauma and everything that goes with it. There are excellent school's out there, school's that do their best to provide for the traumatized child, but the fact remains, there is a lot that can go wrong even with the best of intentions and knowledge.

For many years, parents who have children with the level of trauma ours have experienced, have been telling me home school is the only way to cement relationships and work through trauma, I said, "No way! I need some quiet time to regain my equilibrium!" Ever hear the quote, "Never say, never?" Well, let's just say I am eating all my forcefully spoken words! 

When we had one child struggling in school we limped along, but by the end of last term we had three struggling and home school didn't look so impossible after all. After one particularly trying week, I brought up the subject once more and Dean said, "I think it would be best for the children but only if you are up to it." At that point we started asking questions and looking into our options. We laid out our fleece and waited. There were several hurdles in our way, one seemingly insurmountable one, but one by one they were all taken away.

There were many reasons home school looked appealing, here are some of them.

Childen with FASD:

- need extreme structure, something that is hard to come by in a typical school setting. Field trips, special activities and birthday parties were too much stimulation for Joseph.
-they don't do well with transitions. Going to school and coming home, are two major transitions that happen five days a week.
-they need plenty of down time and some times school is simply to more than their brains can handle.
-they need all of their caregivers including teachers to be on the same level. This can be difficult to accomplish.
-it takes an incredible amount of brain power to understand the world around them, as a result school drained Joseph's brain leaving him prone to violent meltdowns.

-lyme disease brings many physical and neurological complications making school a challenge.
-some days school was simply out of the question but Kiana always wanted to go for fear she would miss out on something. Other days I could hardly get her out of bed.
-Kiana is still in the beginning stages of Lyme treatment, we have no idea what the year will bring. If she needs daily IV therapy, she will do best doing school at home.

Attachment Disorder:
-Most of our children have disorganized attachments to some extent. School is a prime opportunity for them to triangulate and manipulate others. 
-While they may fight against us at home, they are also fearful of something happening to us while they are gone. This caused intense levels of anxiety while they were at school.

All these reasons along with a host of others, made home school look pretty attractive. With one week of school finished, I can say with certainty that there was a whole lot less drama than the first week of school in previous years. It hasn't all been easy but as a whole, I think it will be just what our children need. 

The remainder of Lia's school books came in the mail yesterday so she will now be "going to school" along with her siblings. I was giving her writing lessons and other activities to keep her occupied as I had my hands full answering questions for the other three. Hopefully next week they will be able to proceed without as much help from me so I can give her the time she needs.

This is what school looks like for now. My original plans were for the children to do their work in their bedrooms so it would be quiet with fewer distractions. While I hope to get to that place with time, until they become familiar with the curriculum, they are working in the kitchen.

Our school tote containing answer keys, books and the usual school paraphernalia. All the extra books are currently stored in our bedroom, not exactly an ideal place but we are still working on a system.

Lia's math came in the mail! She will be doing Semple Math, beginning on Monday. I am excited because it looks like just the thing she needs. She is also doing Handwriting Without Tears. I wish I would have known about this curriculum when I taught first grade. 

Thursday, August 10, 2017

Perserveration - Living With FASD

Perserveration is one of the "symptoms" of FASD. Wikipedia has this description;  Perserveration is the repetition of a particular response (such as a word, phrase or gesture) despite the absence or cessation of a stimulus. It is usually caused by a brain injury or other organic disorder. 

Joseph has saying, "I want to build something - I have to build something!' He mopes about the house, melts down and picks fights, because, "I just have to build something." Quite honestly it is driving both him and his mother nuts!

He isn't content to build something with his Lego bricks or his wooden blocks. He wants to make real things like, play houses, vehicles and remote control toys that really work. We have an set of Electronic Snap Curcuits that Dean suggested I get down for Joseph. We put it away after Tristan outgrew it, and I was sure we finally had something for Joseph to build. You snap the pieces together to make a fan blow, light blink and play a song among other things, just perfect for Joseph...or not. He was thrilled when I pulled the box out of the closet but with in 15 minutes he was jumping and screaming because it just didn't work for him. He was unable to follow the directions and he didn't want any help because then he, "wasn't building anything!" So we put the game away for a later date and we were right back to the whining, crying and moaning.

To complicate matters, Joseph has a special knack for using things in any way other than the way in which they were intended. Give him a scissors and paper to cut and he will cut his clothing. A piece of wire will be used to gouge lines in his bedroom floor and sticks can be used as a hammer or pry bar.

My FASD FB group had many suggestions:

-Empty cardboard boxes, toilet paper rolls and tape can be made into all kinds of interesting items.

-Matchstick models, tiny cement bricks

-Someone suggested letting him take apart things that no longer work. He would love that, although with his penchant for hurting himself that wouldn't be an option.

-Magna Tiles

-Cardboard construction sets

Currently he is playing with a small bike that is missing the front wheel. He uses is as a plow, holds a wire to the spokes on the back wheel so it makes music when he turns it and practices taking the chain on and off. This broken bike has kept him occupied for hours.

Saturday, August 5, 2017

Summers Gone And School Is Calling

It was hard for me to see the month of August arrive because I knew what the month would bring...the beginning of a new venture for us, homeschool. My plan is to start school on Monday which will give us plenty of time to take days off during the school year if need be. Two large boxes of books, along with several smaller packages of school items arrived last week. Seeing those boxes made it all the more real, but I am getting excited. 

Here are some pictures of what we have been doing this summer. It is good I have them because I find it hard to remember what we really did.

I sewed a few dresses for Lia using leftover fabric scraps and a T shirt, fast n easy.  

We enjoyed lots of delicious food made on the smoker. These burgers stuffed with onions, peppers, mushrooms, bacon, ham and cheese were among our favorites.

We did an incredible amount of talking a certain young lady down from Lyme induced meltdowns.

One of the many mishaps poor Joseph has in a days time, He squeezed his gogurt and got it on his shirt.

Joseph enjoys making things. He took the coil from his tablet, attached one end to the battery in his tractor and the other end to his calculator. He was hoping to be able to charge the battery.

Ice cream at Dean's brothers ice cream shop, a reward for finishing school testing. Check out their ice cream shop/produce market @ Plum Creek Farm. They have delicious food and are continually adding new items.

Lia taking pictures with my phone at one of the many doctor appointments we had this summer.

We bought Tristan a mattress topper. He was thrilled!

Dean built a deck for the pool, making a lovely place to spend hot summer afternoons.

Tristan and his friend enjoying the helicopter that landed at the work picnic.

Dean smoked several chickens in the smoker. We pulled the meat off the bones and froze it, now I can pull it from the freezer for a quick meal.

Dean bought this little four wheeler, much to Lia's delight. (They have to wear helmets when they drive)

We spent a few days at the cabin this week.

Lia recently learned to ride bike without training wheels. Her little legs got tired so Dean strapped her bike to the bike cart and I hauled both Lia and her bike.

Mr Bear came to see us

Dean and Joseph went to fill the truck with gas and saw another bear, much to Joseph's delight.

They also saw a porcupine

The girls each have a rabbit and they were thrilled when they had babies. I must admit, they are cute!

And that concludes our summer.

Wednesday, August 2, 2017

Trauma, Freeze Response And FASD -Living With FASD

We just got back from a short cabin trip with my family. We enjoyed biking on the old railroad bed, delicious food and quality family time, but the thing our children will always remember is our ride down the creek in an inflatable raft. 

It all started innocently enough. I have wonderful memories of rafting on the creek as a child and I wanted my children to have the same experience. Joseph was soon ready to bail out of the raft. His weak core muscle's made it difficult to stay sitting upright and he grew more and more disgruntled as we floated along. The girls were having fun until we got hung up on one to many rocks and the sun slipped behind the mountains leaving us in the dusky twilight. Kiana was worried about bears, Lia was scared of the rocks and Joseph wanted out, NOW!

Eventually Dean and I got out and pulled the raft through the shallow spots, I tripped on the moss covered rocks and nearly ripper my toe nail off which further traumatized Joseph. As it grew darker, it became colder and the children were shivering and begging to go home. Since the water was so shallow, we made very little progress.

After a while we gave up, and decided to walk to the rest of the way. Joseph refused to get out of the raft, he just sat there and wailed. When I finally got him out of the raft, he refused to walk. He stood in the creek, frozen in place and screamed. I knew he was shutting down because he was cold, tired and scared. When he enters this state of mind, talking is useless as he can't process what is being said, so I took his hand and pulled him along. He woodenly, stumbled after me, wailing as we went. We saw a flash light come bobbing down to the water, people were obviously wondering what was going on at that hour of the night!

My brother in law was out looking for us and he came walking up the creek with his flashlight, further scaring Joseph. He froze in a panic, "There is a man up there and he is coming at us! Who is he, what is he doing?!" I told him it was his uncle coming to help us, but in his state of mind, he was sure it was another threat to his safety. We eventually made it back to the cabin where I got Joseph calmed down. He sat wrapped in his sleeping bag, hugging his stuffed animal until his meds kicked in and he was able to sleep. 

Due to FASD and trauma, Joseph typically freezes in a situation that his brain perceives as dangerous. He suffered significant neglect and frequently felt powerless to protect himself, thus when he feels threatened by something whether real or imagined, all those memories of helplessness come rushing back leaving him overwhelmed and he freezes. Typically someone with such a trauma history will seek therapy but due to the particular brain damage Joseph has, therapy isn't an option at this time. FASD has affected him in such a way that he has difficulty distinguishing between reality and imagination. What he hears, see's or reads, has in his mind happened to him. All these "false" memories only compound his trauma. He also perceives his world differently than you or I, because he processes information through his unique point of view, leaving him with distorted memories. All this, along with a myriad of other things, makes therapy ineffective. 

Knowing this, when Joseph freezes we don't bother trying to talk him into cooperating, we don't rationalize, nor do we try bribe's. Instead, we do whatever it takes to get him moving and out of his frozen state of mind. This article does and excellent job of explaining trauma and the freeze response. 

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Thursday, July 27, 2017

Accepting FASD

The other evening as Dean and I were talking over the happenings of the day I said, "Do you think I have accepted Joseph's FASD?" This was a loaded question because I was struggling mightily with FASD and the repercussions it has on our family.

See, Joseph does best with a very low key life. Most times he is satisfied with this, content even, but occasionally he has a "good day" with a higher than usual ability to reason which causes meltdowns. It is on these days that he feels frustrated with the restrictions FASD has placed on his life.

Recently Dean bought a small four wheeler and Joseph begged to drive it. Steering, controlling speed and watching where he is going is more than Joseph's brain can do at once. However both girls were driving it and in his mind it wasn't fair if he couldn't as well. We were faced with a dilemma. Saying he can't ride would bring on an epic tantrum. Explaining that he wouldn't be able to would go over his head, because in his mind if his little sister can, so can he. Letting him ride would over exert his brain bringing on melt downs from too much stimulation. Too much stimulation results in several days recuperation, while a tantrum is over and done with. It was a no brainer, until my heart got in the way...

Joseph had been having a rough day and the last thing I felt like dealing with was several more days of increased behavior because we left him do something he was incapable of handling. On the other hand, I felt cruel saying no because I knew how heart broken he would be. In the end, he rode the four wheeler, it didn't go well and I dealt with several days of over the top behavior from over stimulation. After he rode the four wheeler I was rebelling deep inside because I knew what the next few days would be like, hence the discussion.

Dean replied, "I think you have accepted it as a whole, but there are times it takes accepting all over again." I can't help but wonder what life would be like if Joseph could work and play alongside Tristan, if he could do new and exciting things without having to suffer for it for the next days or weeks? Think of the fun he could have with his cousins, the freedom Dean and I could have if we wouldn't have to watch him every moment of every day? If I am honest, it makes me angry. I am not angry at him, or his mom - because quite honestly, neither of them are to blame. I am angry because FASD robbed us of what could have been.

So have I accepted that this is going to be a lifelong challenge for Joseph and for our family? Most days, yes. Other days I grapple mightily with it. On the days when I struggle, guilt is also present because why should I feel this way when in reality Joseph is the one who has to work through the difficulties every moment of every day. In the end, it comes down to making the best of the hard times and cherishing the good times. 

Tuesday, July 25, 2017

The Importance Of Body Language

Children with a trauma history, especially those with FASD, regulate off of the people around them. They are like the toddler who, when he falls, looks to see what mom's response is. If mom says, "Oh, you poor thing!" And becomes upset, guess what baby will do? He will begin to cry! If however, mom smiles and says, "It's okay, let me kiss your ouchie. Now run along and play." Baby will usually smile and toddle off happily. Baby's and toddlers are still unsure how to react to situations so they look to their parents, and react accordingly.

Traumatized children do the exact same thing. When they are unsure about something, they look to their parents to see how they respond. Then there are those children who, because of their past trauma excel at reading body language. The child who is pushing mom away because he fears bonding, which to him, means making himself vulnerable to pain and rejection; hones in on mom's body language and he can read her like a book.

All the correct responses in the world, will amount to nothing if you are not in control of your body language. Having "kind eye's, a gentle voice and relaxed posture are anything but easy when your child is melting down over inconsequential things yet again, but it is absolutely necessary.

Lower your voice and slow down your speech.
Relax your shoulders.
Put kindness in your eye's.
Walk gently.
Use a soothing touch.

Sometimes when my children are so upset, they can no longer hear me or process what I am saying, I "speak with my eye's." I say the words inside my head and let my eye's do the talking. Amazingly this sometimes works!

When my shoulders and back are tense, my children mirror my posture and become more dysregulated.

I tend to speak louder and faster when I am frustrated. When a child is triggered, he will not be able to "hear" you. He is operating out of fight, flight or freeze and when his body is in this mode, he cannot process words.

Sometimes a gentle touch, calms a panicked child. Not always, sometimes it will only make it worse, as every child and situation is different.

The Body Language Expert, says communication is:
7%  words (literal meaning)
38% tone of voice
55% body language
Of course, different situations will skew this percentage, but I think it gives us an idea of the importance of body language. 

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Saturday, July 22, 2017

I Don't Know What My Business Is - Living With FASD

Whenever we think we finally know how to parent our son with FASD, something new throws us off track. The latest, "Something new," has been constantly minding everyone else's business along with a decrease in mental/cognitive functioning on his part. These two things combined have been making my brain spin and his siblings frustration and tolerance for his actions decrease. 

I tried reminding him to mind his own business, ignoring him and any other trick I could dream up, but nothing worked so I went to my trusty FASD support group and asked for help. This group is comprised of parents as well as adults with FASD. The latter, is a huge blessing because they often remember doing the things that we parents find frustrating, and can explain why they did them. 

I received many helpful responses. Including the reminder that people with FASD, find it easier to hear and see things outside of their own actions, due to the fact that they have a hard time internalizing abstract reasoning. This makes perfect sense and is something we see in him quite frequently.

I explained why his siblings (and sometimes his parents) are getting frustrated by his constant interrupting and adding his three cents worth to conversations that have nothing to do with him. He looked at me with a puzzled expression and said, "How do I know what is my business?" Ouch! Poor boy! 

FASD is unfair, but at times it is just plain cruel! I should have thought of the fact that perhaps he doesn't know what we mean when we say, "I wasn't talking to you Joseph, mind your own business." No wonder he was getting frustrated with us and vice versa!

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Thursday, July 20, 2017

A Day In The Life -Living With FASD

A day in the life of a parent who's child has FASD.....

You schedule appointments, keeping in mind that you will need to find a suitable babysitter for your child, or bring him with you.

You have to be by his side as he pours his cereal because he has no idea how much cereal (or any food for that matter) he can eat. If you let him, he will fill it brim full with cereal and make a mess when he pours in the milk. Every. Single. Time

You have to monitor his bathroom usage because you never know what will go down the toilet. His, "Out of sight, out of mind," mentality can cause no end of trouble.

You pick up the pictures he drew on scraps of paper and gaze in awe at his ability to draw, then smile when you remember that his birth mom loved drawing as well.

You cringe when you move his bed away from the wall. You never know what you will find, be it empty snack wrappers, dirty undies, wads of chewed paper, or worse.

Your adrenaline begins pumping when you hear his voice reach a certain level, you know a melt down is imminent if you don't intervene.

You smile as you watch him interact well with a toddler, but feel sad that he cannot do so with his peers.

You keep protein on hand for those times when he is dysregulated. Sometimes water and protein are all he needs to get him back on track.

You shed a few tears when friends invite you over, and you know you can't go because your child got to bed late one night earlier in the week and you will pay dearly if you delay bedtime again.

You hold tightly to his hand as you walk through the grocery store and ignore the looks of fellow shoppers.

You are thankful your child looks as healthy as he does, but sometimes you can't help wishing his disabilities were a little more visible. Maybe then people would be willing to show him more grace.

You wish the rest of the world could be as loving and forgiving as your child.

You are tempted to hang a sign on your child stating, "Do not interact with my child, it over stimulates him. Do not give him treats without asking, I need to monitor his sugar." Even that small piece of candy can be enough to make his eczema flare.

You hide in the bathroom and sob out your frustration, ask God for grace and patience to handle one more melt down, one more scream, one more moment with this child. When you come out of the bathroom your child gives you a hug and says, "I love you mom, I am sorry I made you sad," and your guilt knows no limits.

You cringe when another well meaning person says, "Look at you, you are growing so big! What grade will you be in when school starts? Are you excited?" You sense your child's dysregulation rising with each word. You hold your breath because you know he is going to spill out a barrage of words plus you will most likely have a melt down on your hands after the person has moved on.

You constantly fear someone is going to pull your child aside and ask questions about his home life, because you know your child will say whatever he thinks the interviewer wants to hear. Knowing how much pain this could inflict on your family makes you extra cautious, which makes you look even more paranoid.

You will crawl into bed at the end of the day, thankful to have made it through another day while praying for grace for the coming one.

Tuesday, July 18, 2017

When Circumstances Are Beyond Our Control

I like when my life makes sense. I like to know I am doing the right thing in any given circumstance. Unfortunately, it seems Dean and I are constantly being dumped into situations where we either have to swim for our lives, or risk sinking. Humanly speaking, the scariest part about it all is, that we often have several things going on at once so we can't give any one scenario our full attention. Spiritually speaking, this is an excellent way to learn to trust.

Kiana has an appointment with the hematologist tomorrow. This appointment is a follow up for the blood clot she developed from her PICC line. At the hospital they did a test to see if she has a genetic clotting disorder. If this is the case, she may not be eligible for another PICC line, which she needs to fight her Lyme since many antibiotics do not cross the blood brain barrier and due to her age she is not able to take many that do.

On Thursday, she see's her Lyme doctor and we will deciding on a course of treatment based on what the hematologist says. She has been on an oral antibiotic since they pulled her line but it isn't helping much. Her past few days have been full of rages and brain fog. 

Joseph has changed again, something that happens periodically. We learn how to manage a particular FASD quirk only to have that vanish and something else take it's place. The latest thing is a big mouth without a filter. People with FASD find it difficult to see their own negative actions, but can easily see the faults of others. This trait is not endearing Joseph to his siblings in the least! He is constantly monitoring them, all the while doing things to irritate and annoy them. He likes to use big words, and his immature actions coupled with his large, expressive language can be a bit hard to swallow!

Yesterday I spoke with the lady who is over our, "Home school to be." We finished the testing and she called to tell me which levels each child will be on in the various subjects. She emailed me a massive packing order and I will admit that PO made it all look frighteningly real! Can I do this?! Although the thought of another year like last year, convinces me I have to try! 

SWAN is an organization that provides post adoption services. We are in the process of acquiring some of said services which means we have to have several home visits from COBYS, one of  the agencies through which SWAN provides services. Having strangers come into our home to do a home safety check thoroughly traumatized the three youngest. This man brought to mind a certain caseworker who came and was responsible for so much of the trauma our family experienced prior to Lia's adoption. It didn't help that as part of the home safety check, they had to make sure our smoke detectors work. Even though they saw Mr. D press the alarm, they still panicked.

All of these situations plus a few others, make me tremble in my shoes, until I am reminded that with God all things are possible!

Friday, July 14, 2017

Why Trauma Creates "Family Hermits"

Ever wonder why families that have children with early childhood trauma spend most of their time at home? 

Children who have had a relatively trauma free existence, expect the adults in their life to protect them. They expect good things from life and as a result are calm and adaptable. On the other hand are those children who have learned to expect pain and suffering, as such, they are constantly bracing themselves for the next round. Even after these children are removed from a bad situation, they continue to rely on what their past has taught them. These children are always at a 5 on the 1 - 10 panic scale, and everything or nothing will send them shooting past a 10 and into total dysregulation.

Any situation outside of what appears to be the daily, boring routine  can bring on anxiety. Anxiety can manifest itself in many ways such as hyperactivity, chatter and acting out. If the parent tries to intervene rather than accepting their help, the child is likely melt down. If the parent does not intervene, the child melts down as well.

If the child has an insecure attachment or none at all, he will not trust his parents to keep him safe. So he will be hypervigilant and do everything he can to prove to himself that mom and dad are not strong enough to keep him safe. 

These children are barely able to keep a grip on their "sanity" at home where they know the routine, and triggers are at a minimum. These children will act like they have never had a day of training in their lives when they are outside of the controlled environment of home.

Then you have the child who finds life in general overwhelming. Playing with his peers is to confusing, causing him to melt down. He needs an external brain and when he can rely on his parents to provide that, he can handle a very low key existence. He needs his parents constantly by his side, calming him, redirecting him and pulling him aside when he begins to get over stimulated. This same child, who is fairly calm at home, does not do well when he is out and about. For one, he is over stimulated. Two, he doesn't know what will happen next. Three, people are talking to him, trying to interact and his brain cannot keep up. Guess what happens? You got it, another melt down!

Now these melt downs are bad enough, but what the public doesn't see is the days, sometimes weeks, it takes for the child to return to baseline. Remember baseline for them is a 5 versus a 1 like it is for an emotionally healthy child. During this calming down period, the rages are more intense and more irrational and the whining and disobedience is off the charts.

The worst part about it is that anything out of the ordinary can trigger meltdowns. 
-Church, and most of us go at least once a week
- grocery shopping - another weekly activity
- family gatherings
- having friends over
- going to a friends house
- dentist and doctor appointments
- staying at a baby sitter

And of course you can't forget the times a sibling is away overnight, the family gets the stomach flu or someone has a birthday. Then there are the traumaversary's, the anniversary of a traumatic happening. The child may not remember what happened but their little bodies never forget. If you have multiple trauma children in the home, they will be triggered when their siblings melt downs creating another level of stress n trauma.

Quite frankly, is it any wonder we tend to be hermits, as one friend lovingly classified her family? We are barely keeping a grip on our family's sanity because of all the chaos and trauma. This creates what appears to be overly protective, slightly paranoid (or is that totally paranoid?) parents who do all in their power to prevent another melt down. The parents know that the next melt down may dissolve the fragile emotional stability their family is struggling to maintain.

When we stay home and don't do anything beyond the ordinary day to day tasks, our children can sometimes thrive. Then I begin to think they are doing better and we do something like go to the cabin, which we did this past weekend. I am always brought firmly back to earth. 

Doing your best to maintain a stable emotional equilibrium is exhausting, especially when it goes on for year after and year with what appears to be little to no improvement. Eventually you get to the place where you as the parent are so burned out that you don't have the emotional stamina to attempt anything beyond the usual day to day life. Eventually you find your family is just happier at home....until the next time the desire to, "Be like everyone else," starts bothering you, that is!

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Tuesday, July 11, 2017

10 Tips For Caring For Someone With FASD -Life With FASD


1. Reevaluate the meaning of success. Those with FASD can succeed, you just need to redefine what that means. Many people with FASD can hold down a job with extra support and guidance. Your child may not be able to keep up with his peers academically or socially, but he may do an excellent job of entertaining his younger siblings.

2. Provide support. People with FASD can thrive in their home, school and community but only if they have plenty of external supports in place. FASD causes frustration and confusion which leads to meltdowns and an inability to cope with life. If you help them understand the world around them and provide plenty of downtime, they can succeed.

3. Research, research, research. FASD is manifested differently in every individual. This means each person has to figure out what works best for him or her. There is new information coming out all the time, make it your responsibility to keep yourself informed.

4. Psychiatric medication can be helpful, but they will not "cure" the FASD. People with FASD metabolize medications differently, always keep this in mind as they can experience side effects that can be very detrimental.

5. Adequate sleep is a must. Our son is 9 years old and needs 12 hours of rest every night. FASD causes sleep disturbances such as vivid dreams, an inability to fall asleep or stay asleep, as well as a mixed up sleep cycle. Many people benefit from a sleep study. Melatonin and magnesium are also beneficial, but use with caution. A quiet room, weighted blanket and a bedtime routine are also helpful.

6. FASD is permanent. There are many types of therapy out there to help improve the damage done by the alcohol, but there is no cure. Your child will not grow out of it. Put supports in place so that when he hits turbulent times, you have the means to keep him safe.

7. Good days and bad days. FASD is notorious for what is known as good days and bad days. There will be days when some tasks come easy and the next day there will be zero ability. This can cause increasing frustration for the parent or caregiver because typically once someone masters a task, they have it for life. Not so with those with FASD. 

8. Memory can be sketchy at best. This is due to brain damage which causes those with FASD to have a distorted view of the world. It may appear that they are deliberately lying to you, when in reality they are recalling the incident to the best of their knowledge.

9. Praise is a must. People with FASD are doing their best but still tend to fall short of what is asked of them. Even if you don't verbalize your disappointment, they feel it and internalize it. Imagine living in a world where you feel unable to measure up no matter how hard you try? For this reason, praise is essential for good emotional health. 

10. Love them with your whole heart. People with FASD long to be loved. They will return the love ten fold if you give them an opportunity and when the frustrating times come, as they inevitably will, you can soak up that love!

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Monday, July 10, 2017

Positive's Of FASD - Living With FASD

When I write about Joseph, and how FASD affects him, I tend to share tips we have learned to help him and us cope. Today I want to share some of the positive's of  FASD.

A desire for affirmation. This may, sadly, be an attribute only because those with FASD are often on the receiving end of their parents, or caregivers frustration. 

A loving heart. Joseph loves people genuinely. He loves people for who they are, and doesn't expect them to perform at a certain level.

A love for animals. Joseph loves animals. He can be rough with them, but we have discovered this is sensory related. He doesn't realize that he is squeezing an animal to tightly, or that bunnies don't like swing rides.

A desire to obey. Joseph wants to obey, but the world is often a complex place for him. He has difficulties with social cues and zero impulse control, two things that often land him in trouble.

Empathy for anything and anyone who is hurting. If one of his siblings has a head ache, Joseph often ends up in tears because he feels so sorry for them.

He is good at entertaining those younger and smaller than himself. Again, he tends to be a bit rough but this is once more due to his sensory perception.

If you have a friend with FASD, you can guarantee he will be your friend for life. He will love you despite your shortcomings, and give you plenty of opportunities to love him in return.

People with FASD have a lovable quality about them. Even though you may be utterly frustrated, when your child gives you and hug n kiss before he crawls into bed, your heart will melt.

People with FASD are generally kind and empathetic, but their disabilities can obscure their good points. Dig around a bit and some of the things that look like misbehavior may be misunderstanding instead. An inability to perform a certain task is often misunderstood as defiance, while roughness can be sensory related.

If you have someone with FASD in your life, give them an extra hug today. Some children have difficulties with attachment, so if this person is a child, hug his parents and compliment the child. 

Saturday, July 1, 2017

What Is It Like To Parent A Child With FASD?

What does is it like to parent a child with FASD?

It means constant supervision. Joseph is not safe out of our sight. He won't intentionally hurt himself or others, he simply lacks cause and effect thinking abilities. He doesn't think about what will happen if he stands on a stool and sticks things in the fan. He doesn't think about what will happen if he sits on a trike at the top of a hill.

It means explaining and then explaining again, why my child cannot be trusted and then cleaning up the pieces when people fail to believe me.

It means parenting my big for his age, 9 year old like a toddler, but refusing to let others to do the same because of his poor attachment.
It means constantly evaluating what he is saying with what we know to be true because of his unique perspective on life. If he says someone gave him a candy bar, we don't assume they did, we have to figure out where he got it and why he has it. 

It means receiving notes, cards, hugs and kisses multiple times a day from your child who, when he loves you, loves you with his whole being.

It means checking up on everything he does. If I tell him to put the ice cream in the freezer, there is no guarantee it will get there. I may later find it on a shelf in the pantry.

It means making sure he understands what I am saying, just because he nods his head and agree's with me, doesn't mean he understood a command.

It means defusing rages the likes of which would make many people run for cover. 

It means doing ones best to help children understand that their sibling is not always accountable for his actions, even though they receive consequences when they do the same thing.

It means ignoring the shaking heads when people see what is deemed, "Socially inappropriate behavior."

It means feeling frustrated with your child and being unable to prevent the same situation from happening again, because your child is unable to understand a situation.

It means always thinking ahead to prevent those massive meltdowns and tears.

It means listening to screaming and raging for an hour only to have the storm pass and your child come up to you and say, "I love you mom!" Which leaves your heart in a muddle of love and frustration.

It means learning to let your eyes show love even while you are dodging kicks and flying objects.

It means holding your child back from things others his age are doing because you know he is unable to keep up and he will melt down in tears of frustration.

It means always looking for new ways to defuse situations because what works one time is not guaranteed to work again.

It means looking for ways to set your child up to succeed, even if it is a simple thing like hanging his coat on a hook.

Parenting a child with FASD means your emotions are on a constant roller coaster. You can go from rages to adoration to a melt down in moments. Everyone is with FASD is affected differently, what is true for one person may not be true for another. This is only my side of the story, I cannot imagine how difficult it must be for those affected by prenatal alcohol exposure. They need our love and grace....but so do their caregivers!

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Wednesday, June 28, 2017

Expectations = Premeditated Resentment - Life With FASD

Jeff Noble recently shared this quote from an adult living with FASD, "Expectations are premeditated resentments." 

I receive Jeff's  updates via FB and they usually come at a time when I need them the most. 

This particular quote came when I was once more evaluating how we parent Joseph and wondering if we protect him to much. Here are some of the things I was pondering:
-Do we protect Joseph to much 
-Is our parenting preventing him from achieving new goals
-What if the naysayers are right when they say Joseph will never learn self regulation if we continually monitor his environment and remove things that will overstimulate him?

In short, I was doubting myself. Then I saw, "Expectations are premeditated resentments," and I knew that, yes we are doing what is best for Joseph.

If I expect him to "act his age," and he doesn't, I get frustrated and resentment towards him gains a foot hold. If instead, I remember that he cannot regulate himself and do all I can to keep him calm, we are both happy.

When I tell him to clean his room, because a 9 year old should be able to do so, I am tempted to become upset when he melts down. If I tell him to pick up the paper scraps, a more manageable task, he will do just that and I have an opportunity to praise him. Success, again!

He doesn't attend activities unless Dean or I are able to be by his side. He regulates off of the people around him, just like an infant. Letting him run and play with his peers, even if those peers are his siblings, means things will go wrong and he will come away feeling bad about himself, and his parents will be frustrated by yet another issue to resolve. If we have him play with a toy nearby, while we visit, he has fun and we don't become frustrated.

On his higher functioning days, it is so tempting to let give him more freedom, but without fail, we regret it. I need to keep reminding myself that life is so much easier for him when we keep his world small.....remember, "Expectations are premeditated resentments!"

Monday, June 26, 2017

PICC Line Complications

On Saturday afternoon we noticed Kiana's hand was a bit swollen. She wasn't using the arm that had the PICC line and we thought perhaps that was causing the swelling. We encouraged her to use the arm but she said it hurt to much. When Dean tried to help her move it, he noticed her one hand was colder than the other. I called her Lyme doctor and he said it could be a blood clot and told us to take her to the ER. They did an ultrasound and the doctor soon came to her room saying she does indeed have a clot. Our small community hospital couldn't care for her and asked which hospital we would like to be transferred to. A kind friend had come to sit in the ER with us and was able to help me out with some of the decisions. There was talk of transfer by ambulance but my friend is an EMT, so they allowed her to take us. God knew just what we needed! 

Sitting in the ER, Kiana wasn't feeling bad at this point

It was early Sunday morning till we were in our room and nearly 3:30 till we were allowed to rest a bit. Kiana was running a fever by that time and just wanted to sleep. When the nurse came to take her vitals a little after 5:00, Kiana and I were both fast asleep. Around 8:00 the doctor made her rounds and gave me a stern talking to concerning the fact that we made the decision to place a PICC line for something as controversial as Lyme. According to her, we had taken a dangerous risk and this is the price we have to pay. She recommended a developmental/psychiatric evaluation, which was what she felt we should have done in the first place, rather than treat for Lyme. They would consult with hematology and remove the line when it was safe to do so. Very little sleep and the emotional ups and downs of the night were playing a toll on me by then so I only nodded because I wasn't sure I could keep the tears back. I knew once they started, there would be no stopping them. 

Later in the morning they showed me how to give the blood thinner injections Kiana will need. At that time they were saying she would need to stay several days as they seldom see blood clots in pediatric patients and weren't sure how long it would take for Kiana's levels to get where they belong. 

Fast asleep

I was so glad to see Dean come in the door. Making decisions about things when I am seriously sleep deprived is not my strong point. Friends had offered to stay with the other children so Dean could come to the hospital during the night but the thought of sending our traumatized children to a sitter wasn't a pretty picture.

They removed Kiana's PICC line later in the afternoon and showed me exactly how to give her injections once more and then she was discharged and we could go home!

Our evening was slightly chaotic, with many tears and melt downs. At 9:00 it was time to give Kiana the second injection. I looked at the directions on the syringe package and after many tears, we got the job done. As Dean was cleaning up, he asked me how much of the medication I had given, when I showed him, we saw the dosage on the package of syringes was twice the amount on the bottles of medication! I called her doctor and they said she should be fine, just skip the next dose. They told me what to watch for and what we should do if there was a problem. That was the last straw for me....I was done!

The ups and downs, trying to be strong and convince Kiana to go through with the various procedures plus all the brain power I had put into trying to figure out the logistics for daily IV treatment was just too much. 

Dean stayed home this morning and left me get some much needed sleep. Now it is back to the computer to do more research because depending on the test results, Kiana may not be eligible for another PICC line. We were already seeing a bit of a difference after the few infusions she had, and while she and I both hated that PICC line, I was devastated to see it go.

Friday, June 23, 2017

Day One - PICC Line

The PICC line is in and we have the first two infusions behind us, thank you, Jesus! The doctor who placed Kiana's line was running late so she didn't get it placed until 3:30 versus 2:00 as was scheduled. The extra wait time did nothing for her nerves, or mine for that matter. The Lyme has affected Kiana in such a way that she is unable to understand things nor can she handle much. I honestly didn't know how she would do. When they called to preregister her, they kindly agreed to make a note on her chart allowing me to be with her during the procedure. 

Downing yet another cup of water. She was supposed to drink 8 oz every hour for 24 hours prior to her line placement. We didn't quite reach that goal!

A sudden case of nerves had Kiana literally shaking. The kind nurse brought her a heated blanket which brought a smile to her sad face.

I had to wear a hair net, face mask, apron and a special top since they were doing x rays. At first they told me that while I can be in the room, I will need to sit on a chair in a corner out of the way. When the doctor came in he motioned me up to the table and said, "Come over here beside Kiana." I was able to hold her hand the whole time, although they placed a chair behind me and a nurse was ready to catch me in case I fainted. Would you believe it, even though I couldn't see anything (my choice) my head started feeling funny and I fought to stay with it. I knew if I fainted Kiana would panic and the whole thing would be over. Thankfully that didn't happen and the procedure went well. 

After the line was placed, we drove to the doctors office where she received her first infusion, and I received brief instructions on how to flush her line. The nurse gave me the supplies and we were free to go home.

Drip, drip, drip....wait, wait,wait!

Our evening was spent calming children who had been imagining the worst and assuring them that everything would be okay. Some couldn't sleep, some cried and some were hyper - big feelings come out in a multitude of ways!

This morning it was back to West Chester nearly an hour away. This time we got to meet people who have been receiving treatment long term. They gave us the inside information that only those going through the actual experience can describe. It was very enlightening to say the least!

Our biggest concerns at the moment are infection and allergic reactions. One boy said he had a reaction three weeks into treatment, and here I was thinking I can breathe easy after the first 24 hours are past! Swimming is not allowed which is hard for Kiana to accept but I am trying to find things she can do while the others cool off in the pool.