Inability To Self Regulate - Life With FASD

Parenting a child with FASD is challenging for many reasons one of which is, every person is affected differently. The level of brain damage is affected by the quantity, timing and frequency in which the developing brain was exposed to alcohol. This means no two people are affected the same way and what works for one will not necessarily work for another.

Since everyone is affected differently, every parent or caregiver must figure out what works best for the person in their care. And that is where my struggle comes in. Joseph's brain damage is in the area of his brain that controls emotional regulation among other things. He is like an infant, he regulates himself off of other people. He needs someone to constantly control his emotional stability and keep him on track otherwise he will regulate himself off the other people around him. His peers will automatically keep their excitement in an acceptable range, Joseph has no such ability to self regulate. His excitement will keep building until he is either out of control or he melts down in tears or rage.

A child without brain damage learns from past mistakes and when he comes upon a situation where there is a high energy level, his brain will say, "Wait, I was in a similar situation and things didn't go well, I will have to do things differently." Joseph's brain doesn't do that, rather it proceeds down the same road and he has the same reaction time and time again. We used to become frustrated wondering, why doesn't this boy learn? Then we heard about FASD and realized, "Joseph isn't being stubborn, he is unable learn from past mistakes like you and I do."

FASD has been a steep learning curve for me, it yanked me out of my comfort zone and demanded I do what I know is best for my child and leave all my people pleasing, hide in a corner and don't raise any conflict tendencies in the dust. Very few people understood the new regulations we imposed upon those relating to Joseph and I had to open my mouth and explain why in a way that made sense when I wasn't even sure of the "Why" myself. All I knew was it worked and Dean was behind me 100%. 

"Doesn't he feel left out," is the question we are often asked in one form or another. The answer to that is, "No," and the reason is complex. Joseph's brain is damaged in such a way that he functions at half his chronological age. He just turned 9 so that means he thinks and behaves much like a child who is 4.5 years old. So while his peers are off playing kickball, he is quite content to play with his truck and blocks because they are "age appropriate." While he enjoys playing with other children, his brain cannot process multiple conversations, block out noise and play in an organized manner all at the same time. Our brain does this effortlessly, while his goes into hyper over drive and it all falls apart time and time again. At the same time, on his good days he can hold it together when he is away from home but woe to us when we are in the safety and familiar surroundings of home! 

Our goal is to provide a setting where he can enjoy life to the fullest with the least amount of over stimulation. This means very few activities, a good deal of down time, going to bed at 7:00 to ensure he gets 12 hours of sleep which is vital to his ability to function and lessen melt downs the next day, providing the sensory stimulation he seeks such as chewy beads and physical exercise as well as parenting him "age appropriately" which may look very odd but is entirely necessary for him to feel safe.

This chart has been exceptionally helpful to us in understanding the why's and wherefore's of FASD such as why Joseph can carry a conversation that sounds so intelligent when in reality he has little idea what he is saying. 

skill/characteristic                               developmental age equivalent

chronological age                                                    eighteen

physical maturity                                                     eighteen

developmental level of functioning                          nine

daily living skills                                                       eight

expressive language                                                 twenty three

receptive language                                                   seven

artistic ability or other strength                               twenty nine

reading decoding                                                     sixteen

reading comprehension                                           six

money and time concepts                                       eight

                                                                            -National Organization For Fetal Alcohol Syndrome

If you want to learn more about FASD check out the link where I found the above information. They have some incredible resources!

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Happy Birthday Joseph

Happy Birthday Joseph! 

8.5 years ago we got a phone call from CYS asking us if we would be willing to take two little boys who were 6 & 17 months old .... We said yes and jumped onto the wildest ride of our lives!

Last night Dean and I were talking about the past almost 9 years since we began foster care. As we discussed all the things that have happened, the thought came up, "Would you do it again?" Rather than answer that question publicly on here I will share Deans summary instead, "Being in the will of God is the safest place to be, even if it isn't easy."

Happy 9th Birthday Joseph! I made him a Tiger cake since his stuffed tiger is his most valued possession. I thought I did a decent job considering the fact that I waited until the last minute to decorate it but when I asked Joseph if he knows what it is he looked at the cake and said, "A person?" 

Joseph loves tools but he isn't safe with real ones so Dean bought him a plastic set for Christmas. This is how he spends his days. Without realizing it we bought him a gift that meets some of his sensory needs, ear muffs to block sound, safety glasses to block out some of the world and a hat to provide pressure.

Joseph - 6 months

Don't you just want to squeeze those chubby cheeks? Notice the bruise on his forehead? He was always falling or bumping into things.

Joseph has always loved to eat

7 years old

Last evening I met Dean at work and he took the children home while I went grocery shopping. Before we left Joseph came to me and said, "Mom, is going to dad after work my birthday gift?" I asked if that would be a good gift and he said, "It will be fun but it isn't really a good gift." 

We gave Joseph art supplies for his birthday, he loves drawing something he inherited from his birth mom. When I told him that he gets his love of drawing from her, he gave me a huge grin.

Knowing The Why Behind Negative Behavior Doesn't Lessen The Pain

"Knowing the reason behind the behavior does not lessen the pain of parenting a traumatized child,"

- They are intentionally pushing you away because they are afraid to get close.... 
True, but have you ever been in a situation where someone is "allowed" to dish out abuse 24/7 and you are expected to take it and told to love the person more? Most people who find themselves in such a situation know why their child is treating them so badly and because of that knowledge they can rise above it. Of course there are times when it is just too much and they crash but what they cannot bear is when they are told to love their child more, or "If you would stop expecting them to make bad choices, they would." Or, "He/she is always so sweet, maybe you should get some therapy for yourself," insinuating that perhaps you are the problem. If their is a family in your life who has a severely traumatized child, especially if they have attachment difficulties, give the parent some extra grace. Try believing the parent, give them the benefit of the doubt. When the child realizes you are no longer doubting what his parents say, you may have the opportunity to experience the behaviors that once seemed so preposterous.

Lying. Over the top, ridiculous lying.
   I know why they lie, I know it is a survival skill but when you have a child who always lies it is hard not to become frustrated. Some children lie because they have brain damage, some lie because it is their way of controlling their world while other's use their lie's to bring chaos and pain into the home. I have had children lie about nonissue's and others lied about things that could have had serious repercussions if we would have taken their words at face value. Many children who have attachment issues are so good at lying that they can get you to believe things that you know aren't possible. That kind of lying messes with your mind.

Screaming and raging.
  Control, over stimulation, PTSD .... you name it, it will include screaming and raging. Not the normal yelling of words, but all out screaming that makes ones ears ring. Again, we know why but knowing why does not protect your ears, nor does it make it easier to wake your child in the morning knowing the screaming and raging will commence at the slightest real or imagined provocation.

Sabotage.
   This one is tough. When a child intentionally ruins family time, his birthday party or a reward it is hard not to become bitter. B was a master at this and I would swing from pitying him to wanting to tell him, "Fine, if that's the way you want it, so be it." Tristan has a hard time with this one. He said, "Someone throws a fit whenever we try to do something fun, we can't even go away without someone acting out." Sadly, he is right and while we explained why this happens, knowing doesn't lessen the pain.

Destruction.
   Children with trauma often feel undeserving. If you give them a gift it goes against their inner belief that they are bad and unlovable, so they destroy things. Knowing this doesn't make you feel any better when you see they broke another toy, tore another book and smashed another project. One way to counteract this is to give them experiences versus things. Take your child to an event or spend a day with them doing things they enjoy. Although a word of caution, they will probably destroy something else when they get home but the plus side is they haven't destroyed your gift.

Manipulation/Triangulation.
  We all have things that we find especially difficult to swallow, manipulation and triangulation are mine. Sadly, your child will know what bugs you the most and hone that behavior to a science. We have a situation right now that we are dealing with and I find it is best to let Dean decide how to handle such issues because I can't do it in a kind and sensible way. My children know our family rules but if they can get someone outside the family to invite them to do something, they will grab at the opportunity. Most times it is such simple things that the other party has no idea that they are being manipulated. 

Stealing
   Many children who have endured trauma have "sticky fingers." One of our children had to have their hands in their pockets at all times when we were in the grocery store. I also found it wise to check those pockets before we left a friends home. Another child "finds" all kinds of things. If something is missing, we know who to confront. We have talked and given consequences to no avail. We are slowly learning not to let things out where the child can see them but again, understanding why doesn't make it easier.

So if you are one of the many who are wading through the mire of trauma parenting and you are feeling frustrated with yourself for reacting to your child's behavior, show yourself some grace. Knowledge is helpful but living it is another story altogether! Allow yourself to grieve and then pick up the pieces because there is sure to be a battle waiting to be fought.

Christmas Week At Our House

Thank you to everyone who has been praying for us this week. Your prayers are working! We have had a full week and so far the children are doing amazingly well. I know it won't last but we are going to enjoy it while we can.

On Thursday we had a Christmas Party for Lia's Kindergarten class. I made labels saying "Melted Snowman" and pasted them on water bottles.

 

I made donut snowmen for the party. Why is it that my project never turn out like the Pinterest ideas I am copying?

Wednesday evening we went Christmas Caroling with our church. We NEVER go away during the week because of school and the problems that occur when certain people get to bed late. Getting the children to bed late the week of Christmas when their emotions are already over the top, isn't the smartest thing to do but we decided to go for it. Guess what? The evening went well and the children did okay the next day.

Joseph received a sand art set from his teacher. In true Joseph fashion, he willingly shared with everyone.

I had a lengthy to do list on Friday so I told the children if they clean the basement cheerfully and willingly we will make cut out cookies.... what was I thinking?! They did an excellent job, so I kept up my end of the deal and mixed cookies...forgetting that I didn't have much colored sugar or other cookie decorating supplies. I put white sugar in a bowl and added food coloring and we had colored sugar!

Felt Safety For Parents

Did you know my last post on Felt Safety applies to parents as well as their traumatized children? Yesterday proved that I rely on felt safety just as much as my children do.
  
   We were getting ready for church, it was 15 minutes before we needed to be out the door and the dam that has been steadily holding back the pain of the past weeks broke. It wasn't pretty, nevertheless I knew I had to go to church because I was scheduled to teach Sunday School. Dean told me to go to bed, assured me I wasn't going crazy and said he will take care of things. There is something about having someone strong and capable to take care of things that is so freeing. Dean decided to stay home as well since he wasn't sure he wanted to have both Lia and Joseph, plus Kiana when they were all worried about mom.

  Of course Kiana panicked because obviously mom wasn't as strong as she thought and maybe it was her fault that mom was sad and maybe I was sick enough to die and ......

Later in the day I sat down with her and we had a little chat. I should have kept track of how many chats we have had in the past years. Anyway, I asked her why she throws fits for mom and not for other people. She immediately had the answer, "Because I know you are strong enough to handle it."

"Well Kiana, mom is kind of the same way, I knew dad was strong enough to take care of you while I rested. If it would have been a school day I would have kept going because I would know I need to take care of you. Just like you sometimes get upset and hold it all in until you are at home."

Kiana nodded and I asked her if she was worried that it was her fault that I wasn't feeling well. She nodded her head, because she knew her behavior has been a bit challenging here of late.

"It wasn't you," I said and went on to explain how my withdrawal makes me feel sick. "That is why mom has been sleeping a lot and why I sometimes feel sad," I concluded.

 I know my withdrawal symptoms trigger my children because in some way or another, my feelings of instability remind them of their life before joining our family. Sometimes it feels as though my children never get a break, their past is always nipping at their heels ready to stir up trouble.

In hindsight, I think we all needed a day at home to recuperate. The children decorated a packaged gingerbread house, Dean played Q's Race To The Top with them, we read and took long naps. Now to conquer Christmas and vacation! Any tips on how to fill the day for children who need routine but cannot handle much stimulation?

Felt Safety -Helping The Child With A Trauma History Feel Safe

Felt safety is trauma lingo for helping a traumatized child feel safe so he can heal. 

When a child feels safe - "Parts of the brain which control higher learning can operate. Children who feel safe are free to heal and become secure, trusting children. Providing an atmosphere of "felt safety" disarms the primitive brain and reduces fear. It is a critical first step toward helping your child heal and grow.

When Fear Is In Control
A fearful child focuses strictly on survival issues like:
- safety
- hunger and thirst
- fatigue
- escaping scary situations
- making hurts stop and go away
A scared child cannot grasp:
- discussions, sermons or lecture
- complex reasoning, logic or stories
- Philosophical discussions or abstract concepts  
- solving puzzles or mathematics
The primitive brains fight, flight or freeze response can make a child....
- run away and hide
- lash out physically or verbally
- get angry or cry
- stonewall and become unresponsive
- try to control the situation
Remember: fear will bully your child into poor behavior
    - taken from disarming the fear response with felt safety

I came across the above information as I was pondering the concept of felt safety. Dean and I tend to neglect this aspect of parenting when things are going well. We forget that felt safety is partly why things were going as good as they were.

Two of our children tend to become ornery when their sense of safety is violated. It seems like such a simple thing but the hard part is figuring out where/when/why they are feeling unsafe.

Birthdays and holidays are biggies for undermining felt safety. Routine's are disrupted and there are extra treats, gifts and attention all things that a child without a trauma history would enjoy, perhaps even thrive on. But for our children they bring fear because their routine, knowing what will happen next, is what helps them feel safe.

School trips, weekends with friends and large family gatherings bring about large doses of anxiety because they don't know what will happen next. Even if we knew exactly how each event would pan out and could tell them so, they wouldn't feel secure because their early childhood experiences proved that mom and dad are not trustworthy.

Here are some ways we promote Felt Safety:
- keeping our schedule's low key when possible
- celebrating birthdays with just our immediate family
- limiting toys that are overstimulating, such as those with lights and sounds
- filling our son's plate so he is not overwhelmed with all the choices and trying to decide how much of each thing to take
- keeping our voices calm and not reacting when they tell us something that horrifies us (this one is a work in progress) 
- a hug or slight squeeze on their shoulder as we pass by them - a reassuring touch can lessen their anxiety
- reminders of how to conduct ones self in a given situation. If you are kind others will usually react accordingly etc. 

The other week I got a call from school. It was Kiana. She had something she had to tell me right away. I was puzzled because what she, "Had to tell me," was a situation she created in her mind to convince the secretary she needed to talk to mom. As Dean and I talked it over later we both felt she called because she was feeling anxious. She needed to talk to me to make sure I was okay which in turn would mean she was okay. I felt bad for her because I knew what triggered the whole thing. The evening before she had been very nasty and  pushed me until she saw my tears, then she panicked. Unfortunately in her panic, she acted worse than ever because she wasn't feeling safe and she ended up having to go to bed early because both Kiana and I were too upset to work through things.

Joseph needs things to be low key all the time as his brain damage is such that he is unable to regulate himself. This results in what looks like a very boring life for him but in reality is about helping him feel safe. He knows that some things are too stimulating and as he doesn't like how he feels inside after participating, he won't even ask to join in. Other times he will ask but when we ask, "How do you think it would make you feel if you did xyz," he no longer wants to do what just moments before looked so enticing. We have found that if he feels safe in knowing you will require him to follow the rules and have the ability to enforce them, he is able to handle things that otherwise are too much for him.

How do you promote felt safety at your house, especially over the holidays?

Pursuing Peace When You Want To Give Up

This week has been been rough, really rough. There were several things that played into it, I am coming out of several weeks of a nasty withdrawal which always leaves me feeling emotional, Christmas is coming which is hard for Joseph and Kiana finished her amoxicillin which we thought wasn't helping but in hind sight we now see it was knocking the edge off  her symptoms. 

You know, it is easy to say things like:
-"Tomorrow will be better"
-"Everyone has something they have to work through"
-"God will help you"
-"Take one minute at a time"
-"Be glad you don't have XYZ like so and so does, you wouldn't want that either."

But when you honestly don't know if you can make it through another hour, those things aren't very helpful. You need tangible evidence, you need help, you need something to give, you need hope.

When you are beaten down and weary and your child goes into another rage leaving her siblings covering their ears and running for cover, tomorrow doesn't really matter. It is getting through today that is the problem.

When the phone rings several times during the day because your children are melting down at school and you don't know what to do anymore than the teacher but you know you must do something, it is easy to feel discouraged.

When you are desperate for help and the doctor says, "Try therapy," and you know she doesn't know what else to do, it is easy to feel frustrated. You know that while the doctor can tell you there isn't anything more she can do, you are still stuck with trying to find help.

I told Dean that perhaps we should pack up and go somewhere remote until mid January. Hopefully I will be feeling better by then, and Christmas will be past so my children will no longer be over stimulated. He replied, "When do we leave?" 

This morning someone on one of my support groups posted the question, "What do you do when you can't do this anymore?" Someone shared the following poem:

DON'T QUIT

When things go wrong, as they sometimes will,
When the road you are trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit -
Rest if you must, but don't you quit.
Life is queer, with it's twists and turns,
As everyone of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow,
You may succeed with another blow
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the winners cup;
And he learned to late when the night came down,
How close he was to the golden crown.
Success is failure turned inside out -
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when your hardest hit -
It's when things seem worst that you must not quit.

-author unknown

And let us not be weary in well doing: for in due season we shall reap, if we faint not. Galatians 6:9

And Jesus looking upon them saith, With man it is impossible, but not with God: for with God all things are possible. Mark 10:27 

Recently someone encouraged us to pursue peace. As of this morning I am going to stop trying to make thing better. I know that at this point in life, things probably won't get better at least not for a long time. Instead, we will pursue peace. Peace in our home - would that include no rages :) - and peace in our hearts because without that inner peace we truly are without hope.

In Search Of Answers

By the looks of things we are on the brink of another steep learning curve. When I had Kiana at the doctor nearly three weeks ago and she was diagnosed with PANDAS, the doctor told me to bring her back if the medication doesn't take care of the problem. The first few days we saw her symptoms improve a little each day, then they plateaued and took a nose dive. We aren't back where we started, but almost. So yesterday I took Kiana back to the doctor and was told the medication is the only one for strep B and any remaining symptoms would have to be addressed via therapy. Ugh. From the little bit I have learned, I know therapy is not enough, she needs medical help but that can be hard to find. On Monday I have some phone calls to make thanks to helpful parents who have been walking this road for a long time and have experience.

   I was hoping Kiana's pediatrician would be willing to work with us because PANDAS is not always able to be diagnosed via lab work and the symptoms, severity and onset of the illness vary greatly. It comes down to finding a doctor who is willing to spend time figuring out what works for each patient and sometimes use unconventional treatment.

I despise "interviewing" doctors to find one who is willing to help us. We had to do the same thing with my endometriosis, B's RAD and both boy's FASD, among other things. For each of those issue's Dean and I had to do our own research and then find a doctor who was willing to listen to us uneducated people, who insist there are answers out there.

Quite frankly, I don't feel any more at ease sitting before a medical professional and telling him we need a second opinion because we aren't getting the answers we need, than I did the first time. A second opinion isn't so hard but when it comes to a third, fourth and fifth opinion, you can't help but begin to feel discouraged. The alternative, which is continuing on with your child's health and behavior deteriorating isn't an option, either. So what is there to do but keep searching?

   Calling doctors and insurance companies and alternating between begging for help and "being assertive," is not my cup of tea. But this, grovelling or whatever you call it, comes under the word: ADVOCATE. As parents we are called to advocate for our children so I will bury my dislike of questioning people with degree's and keep pursuing answers and help for my children.