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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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Wednesday, May 9, 2018

Dear Struggling Parent You Are Not Alone - Living With FASD


Being the caregiver or parent of an individual with FASD can be isolating. It is easy to feel like you are alone in fighting for your child. You have both physical and mental health problems to maneuver around which are often compounded by trauma, be it from early childhood trauma, or simply from the complexities the individual with FASD faces while traversing the world.

One of the most common responses I get when I post about FASD is, "I am so glad I am not the only one! I felt so alone, just knowing someone else can empathize means so much."

I have often tried to figure out why we feel so alone and I think it has to do with several things such as:

- People with FASD typically do not initially present as having a disability. FASD is often referred to as a hidden disability, which means those with the diagnosis are often misunderstood and/or expected to carry on with life in the same manner as the general public. When they fail to do so they are labeled as stubborn, lazy, defiant etc.... and you feel alone because you know your child isn't "bad," and you wish the public could see how very hard he is trying, how hard you are trying.

- Due to having both physical and mental health issue's, those with FASD often need various levels of professional care. When these professionals fail to communicate accurately the individual can quickly fall through the cracks. The parent or caregiver, in addition to helping them navigate though each day, also has to be a full time secretary who is strong enough to stand up against these providers when things aren't going as they should.... and you feel so alone. It would be such a blessing if you didn't have to be responsible for making sure your child's caregiver's were on the same page and understood the unique complexities of FASD.

- FASD often affects things like cause and effect, boundaries, social skills etc. and as the child grows these things can lead to the need for professional intervention. Knowing your child's behavior is due to FASD and not willful defiance or disobedience, doesn't make the pain any less... and you feel alone because your child's disability presents as behavior problem's leading people assume it is poor parenting, and sometimes deep inside you wonder if they are right!

People with FASD have good days when they can follow directions and are successful at completing tasks. They also have days when their brain simply isn't able to connect the necessary dots. This isn't their fault, it is FASD. This means your brain is constantly evaulating your child's ability, or lack thereof, to perform any given task. No one see's how this wears on the mind and body of a caregiver. It is difficult to explain so you quietly go about meeting your child's needs while silently yearning for someone to understand.

FASD and executive functioning issue's often go hand in hand. Executive functioning include's planning ahead, strategizing, working memory, and controlling impulses among a host of other things. People with FASD often need someone to be their external brain. Human's were created to be in charge of one brain, their own. Being the external brain for one or more additional people has a way of depleting one's reserve's....and you feel overwhelmed and so alone. How do you explain that your brain is tired?

So know you are not alone. There is a whole group of people out there who understand the unique challenge's you face while meeting the needs of the person in your care, be it a child or adult. We understand that the seemingly crazy things you do for your child are because he need's external supports to complete an activity that most people wouldn't give a second thought about completing.

We know that there are times you hide in the bathroom and turn the water on full blast so no one will hear your sobs when your child has just screamed that he hates you and he wishes you would die.

We know the feeling of turmoil in your heart when you hear those words. You know he doesn't really mean it, but it hurts nonetheless. 

We know that attending those weekly and monthly appointments just to keep services in place are draining, that sometimes you wonder if it is worth it all.

We know the how hard it is to put supports in place, to do more than you feel physically able because you want your child to succeed, only to have him back out at the last minute because his inability to understand his world brought on intense anxiety.

We know that hearing the knock on the door and seeing CPS, brings untold terror to your heart because you know your child will tell anyone whatever he thinks they want to hear.

We also know the fear that your child will unknowingly harm himself or others, or that he will take his own life. It is a fear many of us live with daily because we know how truly complex FASD really is.

We have also have days when we say, "I can't go on. I.AM.DONE!" Days when the thought of one more rage, one more meltdown, one more interaction with a thoughtless individual is enough to send you into the depths of despair.

We know the panic you feel at the thought of having to continue doing this for years to come...and you are already burned out.

We know the guilt your feel when you lose your temper, when you yell at your child. 

We know, we understand, you are not alone!

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Monday, May 7, 2018

Boundaries - A Difficult But Necessary Part of FASD

Many people with FASD can be successful with well defined boundaries. For our 10 year old son, these boundaries look like this:


- Play with one toy at a time, as too many toys require to much brain power. 

- Play with only one other person. He processes things at a slower pace so keeping up with a group of people taxes his brain and he melts down.

- Stay in line of vision. He has a poor sense of boundaries and does not think how his actions may affect those around him, leading to a break down in relationships. 

- Limited talking. Interacting with people, including talking, requires a lot of brain power, which is a limited commodity. When he over draws, melt downs ensue. Melt downs zap his brain and lower his cognitive functioning markedly, creating a vicious cycle we avoid whenever possible.

If we consistently implement these four boundaries, things go well and Joseph is successful. Sounds simple, right?And it is until I begin to feel badly for him. I feel guilty that he has to live such a restricted lifestyle. It hurts when I have to say no to a request because I know he will not be able to participate without melting down. His limited ability to apply cause and effect means explaining why we don't allow him to do certain things does little to make him feel better. To him it looks like we are being mean. He often says, "You are just being mean, you don't want me to have any fun!!!" He cannot understand that if we allow him to, "do what he wants," his day to day life would have to be even more restricted. 

I often explain it this way; He has a cup of brain power to use each day, he can use the whole cup at once by doing something big and spend the remainder of the day in tears, or we can let him have small freedoms all through the day. There is no excess, nothing like storing up brain power for an extra fun day. To make it even worse, if we seriously deplete the brain power one day, it may take weeks to build back up to one cup daily, meaning his days have to be even more restricted to eliminate melt downs. This is why we are so strict with him, but as a child who lives in the here and now, he cannot understand why we have to ration his daily cup of brain power. 

His inability to understand why he has a different set of boundaries than his siblings causes him no end of angst. If his little sister can ride her bike up and down the drive, why can't he? After all he is 10 while she is only 6! If his sister who is also 10 can drive the four wheeler, why can't he? It isn't fair and he is sure we are, "Just being mean and making his life hard." We have tried letting him do things even though we know it won't turn out well, with the hope that he will realize that we truly have his best interest in mind, but his inability to understand cause and effect quickly eliminated that mode of teaching.

I know in my heart that he NEEDS these boundaries and it will make him happier in the long run if we consistently enforce them. But in the moment it is so much harder to be consistently firm, especially when I know it makes him feel as though we don't love him. I cannot imagine how frustrated he must feel and I try to keep that in mind when he is crying yet again that, "You are just being mean to me!!"

When he was small, I used to look forward to the day when he would be old enough to have more freedom. I thought that we would be able let up on some of our rigid boundaries as he grows, but I am finding that it works the opposite way. The gap between him and his peers/siblings is continually growing wider, meaning we have to be even more vigilant in providing the supports and boundaries he needs to keep him safe. We now realize he will most likely always need a certain amount of supervision and structure to succeed in life due to the damage he suffered before he was born. If I am honest, this looks like a huge task. I feel totally inadequate to provide this level of care indefinitely but remind myself that, With God all things are possible!


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Thursday, May 3, 2018

It Is Okay If You Are Not Enough - Trauma Parenting

A friend gave me a card with the following written on it:

But in the dark, I hear God whisper,
Did you hug them?
Did you feed them?
Did you clothe them?
Did you love them as hard as you could?
  
   Then you've done enough. Leave the rest to me. And then rest in the fact that though you will never be enough, I am.

Let me fill your gaps. Loosen your grip. make room for me. Yes, do what you can. But don't kill yourself trying to do what only I can.

You are not enough.
And that is okay.
You weren't meant to be.

- jordanharrell.com

I have the card hanging on my bulletin board where I can read it often because in my humanness, I so quickly forget and try to carry the load myself.

We read about trauma and frantically search out the right therapy, the right diet, the right medication, then beat ourselves up when our child falls apart despite our best efforts. No one likes feeling like a failure, especially when the stakes are so high. Especially when your child's future is hanging in the balance. That is when I take comfort in the words, "You are not enough. And that is okay. You weren't meant to be."

You wanted this child, you fought the "system," you begged, and pleaded with God for this child. Then one wonderful day he was legally yours, even though in your heart you considered him your child long before the courts signed the necessary paperwork. How you rejoiced! You had an adoption party, family and friends congratulated your on your wonderful, selfless act. You reveled in the praise, feeling you had the world by it's shoulders. You adopted a child who had no home AND you now have another son/daughter. A win-win situation for all involved. Until it wasn't. Until your child began to pour out the hurt and pain he had bottled up inside, the pain that was just waiting for a safe place to unload. You weren't ready, you weren't prepared. The people who once stood by you, no longer praise you, instead they talk behind your back and report you to CPS. You are crushed and broken. You search desperately for the love you once felt for your child and feel intense guilt for the bitter feelings that are hidden in the recesses of your heart. You cry out a wordless prayer and hear God reply, "Did you hug them? Did you feed them? Did you clothe them? Did you love them as hard as you could? Then you've done enough. Leave the rest to me. And then rest in the fact that though you will never be enough, I am." And those words bring a peace that passes understanding into your troubled heart.

When you can no longer keep your child safe in your home and you seek out another placement for him....

When you find things in your child's possession that make your stomach churn.....

When the child whom you spent hours rocking as he sobbed and raged, turns on you and attacks you physically and verbally.....

When CPS comes knocking on your door because your child made false allegations yet again.....

When your child tells you he needs to talk to you and reveals things his sibling did - and it was on your watch! When you were the adult in charge of keeping everyone safe.....

May you hear Jesus gently whisper:
"Let me fill your gaps. Loosen your grip. make room for me. Yes, do what you can. But don't kill yourself trying to do what only I can."

Because sooner or later in life, we all come to the place where we realize we are not enough. When God has called you to care for the used, abused and neglected little one's of this world, you may find yourself face to face with this truth multiple times a day. When you are responsible for the life of a child and you continually face situations that are beyond your human ability to change or correct, remember God knows we are human. But never forget that HE IS GOD!

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Wednesday, April 25, 2018

12 Things Trauma Parents Have In Common

#1. Silence makes you uneasy. You don't think, "Oh good, she is finally happy so I will take a few minutes to read my book," instead you think, "Uh oh, what is she doing now," all the while running through scenario's from self harming to destroying property, or worse.

#2.  You find joy in simple things like your child eating breakfast with a smile on his face. A flower that your child offered as a peace offering after his latest rage. A cheerful, "Yes mom," in response to a command rather than the meltdown for which you were braced. A commendable report from a Sunday School teacher after you hesitantly sent your child to class against your better judgement.

#3.  Reading books and scholarly article's on trauma stimulate your brain, and you can discuss trauma on a professional level from years of therapy and psychiatric appointments.

#4.  Sharing your war stories with fellow trauma parents is refreshing, and challenges you to count your blessings.... or sink into despair because you realize your situation really is as bad as you thought and not a figment of your imagination.

#5.  You know if your child is stable by the pitch of his voice, the way he holds his body, and/or his choice of words and actions.

#6. When you have a family vacation with a minimum of meltdowns and your traumatized child says, "That was fun!" You gain new hope that maybe your child is beginning to heal.

#7. You analyze. When your child has a good day you analyze everything from what you did the day before to what he has eaten in the past week, hoping to find a common denominator so you can repeat the success. When he has had a hard day you do the same thing, hoping to prevent another fall out.

#8. You go into each new psychologist/psychiatrists office ready to go to battle for your child, even though you don't have much hope that this doctor will be any different than the last dozen. You know most of them won't be able to help you, but you keep trying with the hope that maybe this time you will find someone who has the knowledge and desire to help you search for, and access the tools that your child needs to heal.

#9. Screaming doesn't phase you. You know that sometimes your child just needs to scream out his pain and frustration, trying to intervene only complicates things. 

#10. You know how to have smiling eyes. When your child kicks you and yells hateful things, then comes in the door 5 minutes later with a dandelion he picked, "Just for you, mom!" You swallow hard, put on your smiling eyes and accept the gift for what it was meant to be - a peace offering. Later behind closed doors you cry gut wrenching sobs, wash your face, then prepare for the next round.

#11.  Triggers are common knowledge. You and your husband wordlessly divide and conquer when your child faces a trigger. Be it emergency lights, smells, sounds, textures or certain people. When you come in contact with any one of these, one takes care of the traumatized child, the other takes the remaining children. You both unconsciously scan surroundings, people, and situations to locate, and if possible, remove things that you know will trigger your child's trauma. Sometimes you simply remove the child while hoping and praying he comes through unscathed.

#12. Crying with your child is considered progress. One child asked me, "_________ didn't even hurt you, so why are you crying?" When I told her that I hurt when she hurts, she burst into sobs and allowed me to hold her close. When your previously antagonistic child allows you to comfort him, you have one of the most rewarding experiences of trauma parenting.

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Thursday, April 19, 2018

When Siblings Develop Learned Behaviors



A child who lives in a trauma family will develop learned behavior as coping mechanism in order to survive in a chaotic situation.

We know that a traumatized child exhibits negative behavior due to his experiences, and as a result, we are more prone to show them grace. Grace becomes a little harder to dish out when previously healthy siblings begin using their siblings trauma behavior to cope with the daily rages, destruction, and verbal/physical abuse dished out by these children.

It is uncanny how younger siblings will take on the same body language and voice inflections, as well as using the same wording that their older siblings use when they are melting down or raging.

Things get complicated when you don't discipline your older child for acting in such a way, because you know he is acting in such a manner due to the pain/trauma he experienced; while the the other child is acting out because he see's his siblings doing so and in his eyes, getting away with it. This of course, seems very unfair to the younger child.

To complicate things, the older child will naturally egg the younger child on until he acts out, then step back and watch the fall out, which is typical trauma behavior. The younger child feels as if he is being treated unfairly because he gets consequences for an action when his sibling doesn't.

This phenomenon was causing no end of friction in our family. Sibling relationships were falling apart, child/parent relationships were suffering, and I hated going away because others could easily see what was happening, but since they weren't aware of the dynamics behind it all, opinions were being formed and things were getting sticky. 

I did what I usually do when I get in over my head, I emailed my friend and said, "HELP, what do we do? How do we handle this situation so that the trauma child cannot continue to manipulate relationships, and our other children do not feel as though they being are picked on when they receive consequences for the same actions their sibling, "gets away with?" As usual she had excellent advice, "First our children have to realize that their traumatized sibling has a much smaller world, meaning fewer privileges." For safety reasons some children need to be in line of sight all the time, some need to ask permission before participating in certain activities, some may not use a scissors....there are a multitude of things where a trauma child needs supervision whereas a healthy child has the ability to make choices for himself.  She continued, "Remind your children that while _______________ may not get a consequence for certain behaviors, while you do, they live in a small world. Which would you rather have?" This was brilliant because I knew all our children would agree that following the rules and having freedom is much more appealing than "getting away with" acting out and having a small world!

This can be hard to remember in the heat of the moment when your child throws a fit in public, using the same words and actions as his traumatized sibling or stomps off in a huff, slamming the door and destroying things as he goes. As a parent, I get so weary of dealing with this sort of thing. Sometimes I want to lash out at my trauma child, other times I am angry with the child who is using all the learned behaviors in his arsenal. I want to cry, "God it is hard enough dealing with these behaviors in my severely traumatized child, now I also have to deal with this learned behavior, which is even more frustrating!!!!"

So if learned behavior is pushing you to the edge of your sanity, know one thing, you aren't the only one!

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Friday, April 13, 2018

When Oppositional Defiant Disorder Is Really FASD


Our son was 5 years old when he first received a diagnosis of ODD (Oppositional Defiant, Disorder). For all intents and purposes, he appeared very defiant. I remember telling the psychiatrist, "He does whatever he wants, whenever he wants. He has no respect for authority, and consequence's make no difference in his behavior." It wasn't until Braden was diagnosed with FASD, and I started researching it, that I grew increasingly suspicious that Joseph had it as well. The boys are 11 months apart in age, and their birth moms living situation/stressor's hadn't changed in that period of time, making it highly probable that Joseph was affected as well.

In the past 5 years we have learned that short term memory deficit's, auditory processing disorder, world perception and lack of cause and effect, among other things, are the main issue's behind his struggle to follow direction's and obey command's. These are all symptoms of FASD, all symptoms of brain damage, not necessarily ODD.

When we give Joseph a command, it takes him several seconds to process the command and follow through with it. We have learned we need to be patient, because if we jump on him for not listening, he forgets what we originally told him to do and melts down because, "You are mad at me!"

We have also learned that what he hears, isn't necessarily what was spoken. If I tell him to put the milk on the table, he is just as likely to get the juice. Many children with attachment disorder will intentionally fail to follow direction's as means of controlling their circumstances. This is something we dealt with on a daily basis, and we used to think Joseph was doing the same thing, until we learned that processing disorders are common among people with FASD.

Joseph doesn't respond well to consequences which caused him and us no end of grief. If he was supposed to stay on the driveway to ride his bike, without fail he drove through the yard. Warnings, consequences, nothing helped. After having his bike "impounded," he would promptly drive it through the grass again, then have a spectacular tantrum when we insisted he park his bike again. He didn't associate having to park his bike with driving through the yard, no matter how many times we explained. 

Joseph's meltdowns can be something to behold! We used to get very frustrated when he would lay on the floor kicking and screaming at the top of his lungs. His face turned red, as tears and sweat poured down his face. In our opinion, it was total overkill. Then we learned about over stimulation and sensory overload. We learned that trying to reason with him or distract him only made matters worse. Threatening sent him into an uncontrollable rage and he would literally scream for hours. 

Looking back, it is easy to see the many mistakes we made in parenting our son. So many times we only made matters worse because we didn't know what we were dealing with. 

Here are some posts I wrote about our journey thus far:

When Your Child Has Been Diagnosed With FASD 

Parenting Accordingly - Life With FASD

Dysmaturity Extending The Toddler Years

No Boundaries - Living With FASD

10 Tips For Caring For Someone With FASD

What Is It Like To Parent A Child With FASD


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Wednesday, April 11, 2018

How A Traumatized Child Can Create A Trauma Family

Most people never dreamed how insidious trauma could be, until they took on the responsibility of parenting little people who had experienced extreme amounts of pain, both physically and emotionally in their short life time. You may have considered yourself a strong, emotionally stable parent, until one day you woke up and discovered your reaction to your child's trauma behavior's, showed that you too, had become a victim of trauma. You wonder how did this happen? I only wanted to help my child heal, now I fear I am adding to the problem.

*************************************************

A child born into a loving, emotionally secure family will view the world, and the people who inhabit his world as safe. He knows that everyone loves him and wants what is best for him. During the first year of his life, he has had his needs consistently met which further cements the foundation of trust. 

The child who does not have his needs consistently met becomes fearful, and quickly gets the message that crying will not ensure that he is fed, nurtured or changed into warm, dry clothing. He learns that people in charge cannot be trusted. If he cries mom may slap him, shake him, or ignore him, so he stops crying.

These children learn that no one else can be trusted to meet their needs. They feel alone. They also realize there are some things they cannot do for themselves, so they seek to get those needs met via those with whom they have no ongoing emotional connection. They use many technique's including:
- Manipulation
- Triangulation
- Rage
- Being extra sweet

 These children learn at an early age to read people, and as a result, are nearly always successful when choosing whom to target next, while the adult whom they are  "using" is totally unaware anything has happened. The more opportunities a child has to use his chosen technique's, the "sicker" he will become. A good trauma parent know's this so will do his best to prevent these interactions from taking place. The child, because his brain is conditioned to continually read people, will automatically know that his parent is actively blocking his attempts at manipulating others, thus becoming even sneakier. Mom, in her desire to see her child healed of his attachment issue's and successfully bond with her, become's more vigilant. A battle of wits ensue's which leaves everyone exhausted.

Many children lash out verbally. While trauma parents know these words are coming from their child due to the pain he has inside, it is still very hard to remain objective when your child screams, "I hate you! You are the worst mom/dad ever!" Or, "Why did you adopt me, you ruined my life!" As a parent who's desire is to see your child happy, this can be devastating to hear, eventually you can begin to subconsciously believe the words your child is hurling at you. In a moment of weakness, you open your mouth and say things you never dreamed would come from your lips. If you aren't very careful, the verbal attacks between you and your child can seriously escalate. Before you know it, you sound just like your traumatized child, and in reality you are very similar because you are both responding from the hurt deep within.

Self sabotage was a big one in our home for many years. Deep down many of our children feel like there must be something wrong with them because they are adopted. They are too young to understand things like addiction, abuse, and neglect. They cannot understand how those things affect a persons ability to consistently care for their child. Instead, they think they must be bad people, or as one child recently said, "I shouldn't have cried so much, then my mom would still have me!" When our children experience something fun, or receive praise, it goes against this inner belief so they often act out. If, say, one of our children earns a treat, there is a very good chance he will act dreadfully prior to receiving his treat because he is so uncomfortable with the good feeling inside. Other times, they feel that since they are bad, they don't deserve anything good and will act out to prove their point. Parents can quickly fall into the trap of having the same mindset as their child and treating him accordingly.

Then there is learned behavior, something I despise! When you have a child who is acting out, especially if he is one of the older children in your family, the younger children will quickly take on his coping technique's. Be it raging, whining, manipulating or stealing, younger sibling's will have it down to a science. In our home they even have the same voice inflections and mannerism's. When this happen's it is easy for the parent to become frustrated and dish out consequence's to all involved. Which, by the way, doesn't work.

These are just a few of the behavior's children with trauma employ. If I am honest, they are among the milder one's, as the more severe behavior's are not one's to share on a public blog! A family can quickly take on his child's coping technique's in order to cope with the behaviors being hurled their way. This of course snowball's as it makes the trauma child more fearful, so he ups his ante. The parent panic's and become's even more vigilant, and round it goes. Even if you are conscious of this phenomenon, it is amazing how subtly your child's trauma can engulf you when you are in the trenches day after day.

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Monday, April 9, 2018

The Benefits Of Homeschooling Brain Challenged Children

We are nearing the end of our first year of home school! This week we will have completed the required 40 weeks, which feels like a huge accomplishment. However, we can't hang up our school hats just yet because the children need to finish all their books in addition to getting in the 40 weeks. 

Parenting children with brain challenges means we didn't always get in a full days work. We chose to try home school because of the various brain challenges along with social and emotional challenges our children face. Getting up for school at a certain time, after they had slept poorly, meant a battle every step of the way. Ever try to get a brain challenged child to eat when he is feeling ornery and out of sorts with the world? You can't explain that he will be hungry in another hour because he lives in the here and now. He cannot think about even 5 minutes into the future. All he knows is that right now he isn't hungry and if mom insists that he eat breakfast, he will melt down. Nor can you insist he wear a coat, get dressed, take his back pack, or a host of other things. Children with FASD do not learn from their mistake's which means you can continually fight the same battle's. Children with brain inflammation simply cannot think or rationalize. They are in fight, flight, or freeze, All.The.Time.

Sometimes I could get my children out the door with relative ease, only to get a call from school. They were melting down, or worse, or something had happened and the teacher needed advice on how to handle the situation, and on it went. Toward the end of the year, I got call's nearly daily, sometimes I went to school more than once a day to intervene when a child was raging and couldn't be calmed.

Then they came home from school and everything fell apart. They had tried so hard to keep it together at school, because what child wants to fall apart in front of his peers? Nor did they feel safe at school because the teacher had a whole group of children to teach, not just our traumatized children, which meant things couldn't always remain the same. Children with trauma thrive on routine and structure. Changing the seating arrangement threw them over the edge without fail. A birthday party, program, special activity, or even extra recess was enough to send them into a panic. After doing their best to keep on top of their emotion's, they attacked the one person with whom they felt safe, mom

Our evening's were spent ironing out school trouble's, calming over stimulated children, and trying to get them relaxed enough so they could get a good nights rest, which would make getting them out the door the next morning a wee bit easier.

I was getting run down, my children didn't feel safe, and my poor husband was getting weary of phone calls from his panicked wife asking how to deal with the latest round of school problems. 

When home school came up, I originally said, "Absolutely not!" After one particularly bad day, I decided that perhaps home school wouldn't be so bad after all. God worked out several kinks that we thought were insurmountable and here we are nearly a year later, with our first school term nearly behind us.

Was it worth it? Absolutely. Did I enjoy it? That is a bit harder to answer because home schooling traumatized, brain challenged children is NOT a walk in the park, but the rewards are huge.

Joseph is better emotionally than he has ever been. If he is over stimulated or emotionally unstable, I cut his lessons short or give him the day off. This gives his brain a chance to regroup and refocus rather than forcing him to try to do work and pushing him into further dysregulation.

On the days when brain inflammation is over the top, we don't do school either. My daughter loses what she has learned when she get's PANS flairs and no amount of explaining helps. You have to wait until the inflammation subsides and go from there.

Another big asset was that we could tailor each subject for each child. In some subjects such as math and English, our children were behind their grade level, while in other subjects they were ahead. In the typical classroom setting it isn't always feasible to tailor subject's for each child, especially when your children attend a private school.

So all in all, I would say home school is exactly what our children need. We can adjust the schedule to their daily ability to focus which means they are at least a tiny bit more agreeable. I keep our days low key, or boring as some of my children call it, which enable's them to use their brain power for studies versus using it to cope with other stressors. They are doing lesson's that challenge them but do not overwhelm them and we go over each new concept until they have mastered it.


Dean and Lia playing Go Fish with the alphabet cards.

Dean explaining a math lesson to Joseph.

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Friday, March 30, 2018

Grief Is Love With No Place To Go - Living With Trauma


Someone shared this with our support group and I fell in love with it. I thought it perfectly sums up what it is like to parent children who cannot or doesn't want to be parented. 

When you adopt a child, you don't do so thinking, "Someday my child may be hurting so badly due to past trauma, that he will do his best to destroy our family."

You fully intend to love and care for him. To meet all his needs as well as supply some of his wants, just to see him smile.

You wanted to hug him close, tuck him in at night and hear him whisper, "Good night."

You dreamed of spending one on one time with him. Of building your relationship, and teaching him about Jesus.

You looked forward to passing on the treasure's you saved from your childhood. Watching him play with your old toys would be such a joy.

You wanted to shower him with love and affection, because that is what being a parent is all about.

You never dreamed that your child might not be able to handle a close relationship with you. That he might not trust you, even after he has been in your home for 10 years and always had his needs met. You didn't know some children have been hurt so badly in their short lifetime that they may not be able to function in a family setting. Who knew that some children feel safest when they are inflicting pain on others because it gives them a sense of control?

Because you love your child, you refrain from hugs, knowing that he fears physical touch.

You watch from afar as a stranger meets your child's needs because you couldn't keep him safe in your home. 

You listen as your child tells a stranger his deepest wishes because in his mind a stranger is safer than his own parents.

You watch your child make poor choices and long to help him get on the right path, but he wants nothing to do with you. 

You cry as he gets into trouble yet again, knowing the hard road he has ahead of him.

And you feel grief. Heart wrenching grief. Grief hurts. It rips deep into your heart until it feels like physical pain. As you analyze your hurt, you come to realize that what you are really feeling is loss...the loss of an opportunity to love your child in the way you always dreamed.

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