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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.

Thursday, June 22, 2017

Busy Schedule = Stressed Mom

I haven't been posting much these past few weeks. When life gets busy my brain begins to function at lower n lower levels making writing difficult. I know what I want to say but it just doesn't come out right....now I sound like some of my children. :)

This week has been wild, beginning with Summer Bible School on Sunday evening. Dean is teaching 4th grade, so he went every night so far. Kiana, Joseph and I only made it once, not at all what I was planning.

On Tuesday I went to my sister to see my newest niece. She was so tiny! Kiana was in awe, Abagail is even smaller than her American Girl doll.  


We came home and squeezed in a little swimming, because the children thought it was soooo hot, before hurrying off to school to go over Lia's recent evaluation. The results of the evaluation didn't surprise me in the least, in fact they affirmed what we have been suspecting due to things we see at home. I need to take her for an OT eval, although I will admit the thought of more therapy on top of everything else we have going, nearly made me cry. Dean got take outs for supper because at that time I was still planning to attend Summer Bible School. Somewhere between school and home, all those plans went down the drain and I stayed home with my sobbing 9 year old's.

Wednesday I had errands to run. For some reason, I have been feeling like life will pass me by for the next 6 weeks and anything I want to get done this summer needs to be completed before Kiana's treatments start, hence the crazy schedule. Poor Tristan got a migraine which sent his already unsettled siblings into a blind panic. I guess I never realized how much their feelings of security rest on how big brother is feeling. If he is sick it is as earth shattering as when mom or dad are sick. Needless to say, we didn't make it to Bible School last night either!

This morning the children are working on school testing, something they were less than happy about. We have decided to home school our children for the coming school term, something we have thought of doing for years but I always thought it would be to stressful. However last year made me reconsider. Parents who have walked a similar path to ours have been telling us that home school is the way to go, especially when you have children with FASD and/or attachment issues. 

Learning the home school ropes, Kiana's daily IV schedule, Lia's evaluation and some other things we are working on succeeded muddling my thinking process. My poor husband gets frequent phone calls because my brain simply locks up and refuses to cooperate. 

Monday, June 19, 2017

Our Weekend Away

We had a wonderfully relaxing weekend at "Uncle Marks Cabin," as the children call it. With everything the children are working through, it doesn't work to spend time with large groups of people. Since we kept everything very low key, they were able to leave most of their "baggage" behind and enjoy a weekend away from home. 


One of the many trails through the woods



The Mountain Laurel was beautiful!

Feeding the fish some of the rolls that got squashed on the ride to the cabin.


A little Indian that came through our "camp."

Reading bedtime stories to the girls


Playing "No More Monekys Jumping On The Bed," with dad. Lia wanted me to play with her the next morning. She told me I don't need to read the directions because dad read them last night and he did a good job!

Lia is missing her two bottom teeth!


Waiting for supper...they aren't as grumpy as they look!

Sausages taste extra delicious when they are made over a wood fire




We spent the weekend driving the many trails through the woods


Kobi

Joseph picked lot's of  flowers for me throughout the weekend

Powerful woodsplitter

THIS is the main reason our children like going to this cabin

Beautiful woods

Pure laziness! I went to the library and checked out a stack of books so I had plenty of new reading material.

Our cabin trip felt somewhat like the calm before the storm. On Thursday Kiana goes for her PICC line and the first of 6 weeks of IV treatment for her Lyme. Please pray for her, the Lyme has affected her reasoning and she is unable to process information very well which makes this whole process much more difficult. Lia and Joseph are going to struggle as well since they rely on stability and plenty of mom time. I wish I could clone myself for the next months. The treatment looks daunting, but we cling to the promise, "With God all things are possible!"
Matthew 19:26


                     
  

Saturday, June 10, 2017

Attachment And Attention

Attachment disorders are caused by a break in the bonding process, which causes a child to view adults as untrustworthy. These children still crave love and affirmation, but fear getting it from the primary caregivers - the parents. Because of this fear, they try to get it from other people. This is referred to as a lack of stranger danger. "Stranger," doesn't necessarily mean someone unknown to the child. A stranger in this instance is basically anyone besides mom and dad.

Our children are pro's at seeking out attention from other people. Joseph does this by acting childish, Kiana does it by being sweet and putting on an innocent air. While our children's attention seeking behaviors appear very obvious to us, other people usually do not pick up on them. 

Kiana has been having a tough time accepting my love lately. She is feeling rejected by her birth mom and want's nothing to do with my "second hand" mothering. While she is actively pushing me away, she still craves affection. 

We live in a long stone lane which we share with several other families. The girls were playing at the end of our immediate drive the other day, and I told Kiana that they must come closer to the house. The next time I looked out the window, our neighbor E, was standing on our drive chatting with the girls. Red flags went up as it is very unusual for her to come and chat with the children, since she is aware of their attention seeking behaviors. I kept an eye on the situation and after she left I called Kiana inside. She was barely in the door before she said, "I didn't tell her to come up!" Which I knew meant she had done just that. We talked for a bit and Kiana admitted that she told Lia to tell E to come talk with them. Lia of course had no qualms about yelling down the drive.

"Why did you tell E to come?" I asked Kiana. She insisted she didn't know and I believed her, but I wanted to help her understand her actions so I continued pressing for an answer. After giving various answers, I helped her out. "I think you are needing some love and since you won't let mom love you, you are trying to get it from other people." She was quiet for a moment and I could see understanding dawning. I wish I could say she changed her ways but as is typical for children with attachment difficulties, knowing that I had her behavior figured out made her feel threatened and things continued down hill.

This is a prime example of why we keep our children nearby. Joseph has zero stranger danger awareness, while Kiana only tries to get attention from others when she is emotionally unwell. While Kiana enjoyed the attention she received from E, she doesn't like how she feels now. Guess who gets to clean up the mess? Mom, the one whom she already has a problem with. I could have called her inside while E was still here and I briefly considered it but I knew doing so might make my neighbor say it was quite alright that the girls wanted her to come up, which is the last thing she needed. When the people she is trying to get attention from tell Dean or I that it is okay if she does xyz, it gives her someone else to manipulate.

Thursday, June 8, 2017

Sibling Wars, Swimming & Sewing

Kiana and Joseph have an interesting relationship. They can't stand each other but let someone else be unkind to one of them and they are right there to defend their sibling. We still laugh about the time when they were toddlers and we had company. A child was harassing Joseph so Kiana came up behind the child and bopped him on the head with her toy. No one will fight her Joseph!

With summer vacation now it full swing, Kiana and Joseph have upped the ante. They are constantly hollering, "MOM, he made a face at me!"  The offended party retaliates with, "I just made that face because she hit me!!!"

I tried all the usual tactics, but nothing worked, so Dean got one of his shirts and told them they shall wear it while doing a simple chore together. This required them to work together and put aside their differences. One time when they were especially disregulated I gave them each a small candy bar to unwrap and then they fed it to their sibling. Usually they end up laughing but one time Joseph said, "I feel like saying a word in Dutch!" 

This morning we took the "friendship shirt" to a new level. Kiana has been having a teary morning. She was triggered yesterday and this morning I have been unable to get her unstuck from her bad mood. She cried over everything, leaving me in despair. Suddenly I remembered the shirt! She and I barely fit inside the shirt. Initially she was furious at having to be so close to mom but eventually she quite fighting and allowed me to hold her. I told her we can take the shirt off whenever she is ready and you know what she said? "I am not ready yet!" I told her I feel like a kangaroo and you can be my little joey. As soon as the words were out of my mouth I knew I had said the wrong thing. She was not about to be called Joey - that is too close to Joseph!

The children have been swimming for nearly a week already. Joseph thinks I just have to join them. I told him thanks but no thanks, I am not that hard up to freeze!



Kobi can hardly have it that he cannot join in the fun!


Somebody lost another tooth. Her bottom tooth was nearly falling out for a week or more. She was eating strawberries and "Mom, it just fell out, it feels like a dream!!!"


I pieced scraps of fabric together and made a skirt which I sewed onto a T shirt, an instant dress.


Sorry for the blurry picture I wanted to capture his proud grin and didn't let the camera focus. Joseph figured out how to squeeze out of his door without setting his alarm off. He was incredibly proud of himself, but since that alarm is there for a reason, dad remedied the problem.


Dean picked these roses for me.






Monday, June 5, 2017

When Your Brain Is Struggling -Life With FASD

I have read stacks of books, talked to doctors and therapists and watched training's online to learn all I can about FASD. Despite all that, I was lacking one thing. I didn't know what it feels like to have a brain that is unpredictable in it's responses. While I knew that FASD affects a person's ability to function, I still found myself getting frustrated with Joseph. I prayed for patience and wisdom, never dreaming that one day I would be able to personally relate to Joseph's struggles.

Many years ago I was put on an antidepressant and while it helped me initially, over the years it has been doing more harm than good so with my doctors permission, I decided to quit taking it. Little did I know that I was about to begin one of the hardest physical battles of my life! While many antidepressants affect one neurotransmitter, I have the privilege of taking the one that affects two of them, making it ever so much harder to wean off of it. To give you a bit of an reference point, I have been weaning off the this medication for 18 months and still have several years to go, unless God performs a miracle and heals my central nervous system.

Now I know what it is like to search for a word or thought and be unable to find it. It is like my brain does a search and comes up empty. I teach Sunday School every other week and my class of 4&5 grade girls are very used to me stopping in the middle of an explanation and not being able to find the words to finish. Joseph does the same thing, he will be talking and suddenly he loses his train of thought. It can be frustrating because it takes him a long time to find the right words to explain things, so you stand there waiting, only to have him be unable to finish his sentence. Now I am the same way.

People with FASD often struggle with social skills. I can sympathize now. Some days I can carry on a conversation and other days, I can't think of a thing to say which makes socializing difficult to say the least. Other times I do and say things that I know are incorrect or walk away in the middle of a conversation. I know I am doing something wrong but I can't figure out what is appropriate. 

Joseph has a hard time regulating his body temperature. He will be cold on warm days and warm on cold days. Now I am the one shivering in the sunshine or sweating away when it is cold outside.

Someday's Joseph wanders around unable to apply himself to anything. His toys don't hold his interest, he can't read and nothing sounds like fun. My withdrawal makes me feel the same way. There are days I find myself pacing around the house because I am unable to collect my thoughts enough to get any work done. Reading, my favorite hobby doesn't even hold my interest.

There are times when Joseph is just grumpy. Nothing makes him happy, everyone annoys him. I can relate so well. I have become personally familiar with irritability in the past 18 months. 

Loud noises hurt Joseph's ears. The singing at church can be enough to make him cover his ears. I never understood, now I do. Just ask my children. I often tell them, "Please stop making that noise!" When they are unaware they are even making a noise.

Joseph needs 12 hours of rest a night to be able to function. It takes an incredible amount of energy to make it through the day when your brain is struggling. I sleep and sleep and sleep. Tristan asked me how I can sleep so much. I told him my brain gets worn out from thinking all day.

Joseph quickly becomes overwhelmed when we have to much planned. We used to keep our schedule fairly empty because we knew he needed the down time. Now I have to carefully watch my schedule because I am easily overwhelmed. When I get overwhelmed the only cure is 10 plush ours of sleep and several quiet days at home. Pushing through it doesn't work, it only makes it worse. So Joseph and I thrive on quiet days at home while the rest of the family tries to accommodate us.

It is like all my senses are painfully heightened and I never know which days they will rise to unbearable levels making me want to crawl into a hole and hide until the storm passes. I share this to say, if you love someone with FASD, please show them extra grace. My heart goes out to them because while withdrawal is horrible, I have the hope that someday I will feel better, while those with FASD do not have the privilege of thinking if I can hang on, it will be better in a few years.

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Saturday, June 3, 2017

I Want My Mom To Love Me!

We experience many rejections in life but few are as earth shattering as the rejection of a parent. Many children who have been adopted feel rejected whether or not that was what really happened. And who can blame them? 

For various reasons, of our three children Kiana struggles with this the most. In her childlike mind if her mom loved her she would have worked at her life until she succeeded in getting Kiana back. We have talked until we ran out of words trying to explain the harsh reality of drugs, alcohol and how hard life is without a support system to no avail because she is convinced, "If my mom loved me she would have gotten me back."

Today was a teary day for Kiana. Poor girl. I don't know when to blame her actions on Lyme, when it is typical 9 year old behavior or when trauma is the culprit. I told her therapist that so much of our parenting is based on gut feeling. "I feel like we are just winging it!" I told him. "Another way of describing it would be called intuition," he said. "You gain intuition by spending time with someone and learning what they respond to best. So I would say you are probably doing what is best for your children." He will never know what a comfort those words were!

Anyway, this afternoon Kiana and I had a chat, something we haven't had much success with lately due to the impact Lyme has had on her ability to process information. She said, "I just want my mom to give me things and call me." Kiana speak for, "I want my mom to love me." I asked her why she thinks her mom doesn't return our phone calls. She promptly said, "Because she doesn't love me!" I urged her to think of other reasons but she couldn't come up with anything.

"Maybe she worries that you won't want to talk to her," I suggested. Kiana burst out, "But I do want to!"

"I think she might feel guilty," I explained. "She probably feels bad that things turned out as they did. Remember how you feel when you have done something and feel guilty, then you don't feel like you deserve good things?" Kiana nodded, she could easily relate to that feeling.

"Maybe she doesn't have a phone," I continued. "Dad has to pay for our phone usage each month. I someone doesn't pay, then they can't use their phone." That led into a long fear based discussion of whether or not we are rich. "We have enough money to buy the things we need," I said, "So yes, we are rich."

In the end Kiana admitted that there is probably a reason her mom hasn't contacted us. "Your mom will never forget you," I assured Kiana. "Deep down mom's love their children, sometimes they just make poor choices which hurts the child."


I told her about the years of prayers and tears that we went through before God answered our prayers and gave us a little girl who needed our love. "Now you have a choice," I reminded Kiana. "The choice of whether or not you will let us love you and fill that empty place in your heart." I held my arms out for a hug and she hesitated for a second before giving me a huge hug. 

The storm has passed by once more....until next time, that is! Our hope and prayer is that someday she will be able to come to the place where she can feel secure in our love for her.