Friday, April 28, 2017

Programs And Therapy Mom's

Last night was the children's Spring Program at school. Oh the drama, banging and screaming that went on, all because of a program! This year like previous years, Joseph didn't participate in the program. Standing in front of a crowd without someone by his side to regulate him would not be a good idea, besides he says, "Standing up there makes my stomach hurt." Even though he didn't help with the program, he still had a 90 minute meltdown on Wednesday evening. Thankfully it coincided with his sisters meltdown so at the end of 90 minutes they were both calm and in bed.

Kiana is home with me this morning working through big feelings brought on by the program. We had the usual, "I am upset because you adopted me - you aren't my mom - I wish my birth mom would have taken care of me" talk. The other week in therapy Mr D asked Kiana what makes a mom. She said, "A mom is someone who takes care of you, give you food, loves you and keeps you safe." 

Mr D said, "So you are saying anyone can be a mom, even if she doesn't have a baby grow in her tummy?" Kiana slowly agreed because she knew where the conversation was going. In the end she had to admit that I did the things a mom should, making me just as much her mom as is her birth mom.

Near the end of our talk this morning I asked her what kind of mom I am, the kind who cares for her children or the kind who doesn't. She wasn't ready to give in yet, so she said, "You are a therapy mom." 

Kiana is on the floor at my feet with her My Loving Family people busily re enacting the program. Those people have been quite therapeutic over the years. Children naturally act out their feelings through play. Watching and listening as the girls play with their "families" has been a huge asset helping us understand what is bothering them.

Tuesday, April 25, 2017

Parenting Ideals - Then & Now

Back when I knew how to parent I had this idea of what makes a good parent. These are some of the ideals I had...

My children would pick up after themselves. They would never think of leaving wadded up socks, jeans with one leg inside out and smelly towels lying on the bathroom floor. My children would know better than that. I would teach them how to be neat and clean. We wouldn't have to search high and low for a missing Sunday shoe and we would NEVER go to church with anything less than Sunday footwear. 

School papers, consents and incomplete's would be signed and returned promptly. We wouldn't have to find wrinkled, weeks old "need's parents signature" papers in the bottom of a backpack. In fact, our children wouldn't get such things in the first place! 

We would give our children a "voice" and they would in turn listen to us. Don't laugh, we honestly thought that. Then we entered the pre adolescent years and mental health issues smacked that idea so hard it shattered in pieces. Nowadays we daily hone our skills in the "lie detector" department and plead with God to help us know the truth and not cause further damage.

Our children would have daily chores and take pride in a job well done. Do I hear someone laughing?! I feel like the "job police," constantly checking up and making sure things are done correctly. The bedroom floor gets swept but the paper trash is shoved under the bed or dresser. The clean clothing gets put away - all in one drawer rather than in its designated spot. The toys get picked up but everything is thrown into the toy box instead of being put in the correct tote. Table scraps are taken out to the chickens but they might be dumped on the wrong side of the fence rather than inside where the chickens can actually reach them.

Our children would be each others friends. Instead they seem to thrive on destroying any healthy sibling relationships that even dare to begin sprouting. They used to hit, push and shove now they have "graduated" to doing the same thing with their mouths. The 5 year old is able to give her teen age brother a run for his money in that area. Last night we called a family meeting. Dean told the children, "We have a problem in our family, does anyone know what it is?" No one spoke for awhile then Joseph ventured, "We aren't very nice to each other???" You got it, buddy! Although I do have a little hope, during therapy the other week Kiana was speaking of one of her brothers and said, "He likes me in his heart, he just doesn't know it."

The years have changed my goals and redefined what I view as successful parenting. 

I would have once been horrified at some of the things that my children think and say, now I am so thankful they feel safe enough to tell me these things.

I now see bravery, strength and trust when my child hands me a note from the teacher - the kind of note any child would cringe at having to give to his parents.

When my teen age son scoops his little sister up and carries her because her legs are tired, tears prick my eyes. The sideways grin he gives when he senses me watching him reminds me of his dad and I remind myself to cherish the little moments.

When my child with "food issues" gives the last of the cereal to a sibling, I feel those tears again.

When my son who finds life challenging in most every way whispers, "I am going to do my best to be nice to _________," referring to the sister who has been less than kind to him, I feel like maybe some lessons are sticking.

When I receive a hug after a rage that has lasted hours and my child says, "Thanks mom, I love you!" I tend to think I am the most blessed person in the world.

I think I would tell the "me" of 10 years ago that parenting isn't just about teaching your children to work and behave, it is about teaching them empathy, compassion, forgiveness and building a strong character.

Sunday, April 23, 2017

Sunday Triggers

We had a meltdown of a different sort today. This one was based on trauma and while it manifested itself very differently than the one Joseph had on Friday, it was every bit as intense.

It started this morning. Sundays are major trigger days for Kiana for a variety of reasons, one of which is, listening to sermons brings about a barrage of feelings that she cannot handle and I often have a hard time deciphering. She has some major behavioral struggles right now due to Lyme and PANS. Sometimes she is accountable, sometimes not but she usually feels guilty after an episode even though we have explained why she reacts the way she does. Listening to a sermon often sets her off because as she says, "He is preaching about me!!!!" Since her behavioral issues are often so vast, she can usually find something in the message that she feels is directed at her personally.

The other big issue is fear. This morning we had an excellent message on living so that we are ready when Jesus returns and destroys the earth. It was a very timely message, one that spoke loudly to me but I was sure my 9 year old was listening and taking it all in, especially since she was "intently" reading her Bible. I pulled her close and asked how she is feeling. She gave me a wide eyed look and said, "I'm okay," a good sign that she was not okay!

After lunch she was stomping about the house raising chaos and being defiant. I tried talking to her but she refused to co operate so I was about to send her to bed when Dean said, "I wonder if this mornings message is bothering her." She vehemently denied it. Dean and I have a quote, "Me thinketh thou doth protest to much!" Meaning, the more the child protests that something isn't bothering them the more certain we are that it is. Kiana refused to talk about her big feelings, giving all sorts of superficial reasons for why she has them. By this time I was pretty sure I knew what was wrong but I wanted her to tell me versus me telling her what she was feeling. I explained how I learned in therapy that when something feels big and scary talking about it helps the scary feeling get smaller. "That is why I want you to tell me what is bothering you rather than me telling you what is wrong," I explained. Eventually she said, "I don't want my stuff to burn, what about my toys, my clothing...what about Kobi?" This is where it gets tough with children who have experienced complex trauma. Telling her to trust God to meet her needs will not make her feel any better because she has a hard time with trust. Telling her that she will have better things in Heaven doesn't help because in her mind Heaven is an unknown which makes it something to fear. 

Dean told her that just like Mom and Dad make sure she is safe and taken care of, in that we provide food, clothing and shelter, Jesus will do the same in Heaven. The more we talked the safer she felt and eventually we got her talked down from the place of fear and the thought of "losing my stuff" was no longer an issue. She gave me a hug and went cheerfully off for her nap.

Kiana and I spend many Sundays in the basement at church talking through her big feelings. While she despises doing this, it gives her and I an opportunity to work on our bond, which is always a blessing.

Friday, April 21, 2017

Math And Meltdowns - Life With FASD

A math paper was the cause for a total meltdown today. An all out physical, verbal, hitting and throwing match that ended up with a certain young man needing to be restrained for his safety.  

  Joseph has a book, a ring binder, where he keeps all his important papers and "records." He also writes stories and keeps his diary in that most treasured book of his. My brain was missing in action when he came home from school and asked if he may write in his book. I said, "Why don't you do your math paper if you feel like writing." Totally forgetting that writing in his book is his way of unwinding. He got his paper out cheerfully enough, but when he sat down at the table across from where I was cutting out a dress, a cloud came over his face and he began grumbling. I told him I will help him as soon as I am finished with my project, which he initially accepted. Suddenly the grumbles became yells, the paper was tossed onto the floor and things went flying across the room. I should have figured out what was going on, but I didn't. My emotions weren't exactly the most stable at the moment, so I left him rage rather than confront him and join him in his frustration. Sometimes he runs out of steam when no one pays attention to his storming about, but not today. He went into his room where his door and the walls received a dreadful beating. When that didn't bring about a response he upped the ante. 90 minutes later he was calm enough that I could talk to him and ask what was wrong. His answer? "I wanted to do my math tonight so I don't have to do school work tomorrow!"

"I understand that," I said, "But what did mom tell you?"

"You said you will help me when you are finished," he replied.

"So what was the problem?" I asked, "Does mom do what she says she will?"

"You do what you say you will, but sometimes other people don't so I didn't know if you would help me. I did not want to have to do school work tomorrow and I was afraid I would have to!" 

Communication is something people with FASD sometimes find difficult. As their parents, it is our responsibility to help them use their words and not be pulled into their drama. Easy to say, hard to do, especially when something as simple as a math paper trips you up!

Joseph is beside me working on his math as I type this and I am finding out there was more to his meltdown than I first thought....3rd grade learned about fires today. Fire's (think lights/sirens) are one of Joseph's biggest triggers. Now that the adrenaline has worn off his mouth is going a mile a minute, typical for our little guy.

Thursday, April 20, 2017

Update On Kiana

We are nearly 2/3 of the way through Kiana's first month of treatment with her LLMD (Lyme Literate Medical Doctor). Thankfully her rages have decreased greatly in intensity and they do not last nearly as long as they had even two weeks ago. We feel she is more emotionally unstable  and she certainly has a lot more physical symptoms, although that can be a good thing as it means the Lyme is dying off, but neither Dean nor I are sure that is what is happening. The more I learn about Lyme the scarier it is. The good thing is that knowing how devastating Lyme can be, gives me yet another opportunity to increase my trust and faith in God.

 Her therapy is also going pretty well. Mr D is a lot like Miss Laura, who used to be B's therapist. He and I talk about how Kiana was since her last visit before bringing her into the room which greatly hinders her ability to manipulate the session. Best of all he is a Christian! Her homework assignment for this week is to ask God to show her ways that she is special and then to report what she has learned at her next session. That is a tough assignment for someone suffering from her level of trauma and insecurities, but it is our prayer she will be surprised to learn just how special she is. Since she doesn't trust/believe Dean and I she doesn't believe us when we tell her we love her despite her actions. Neither does she believe she is a special girl, which we honestly think she is!

Sunday, April 16, 2017

NeuroPlus Review

A while ago Dean was reading an article about NeuroPlus, an affordable "homeowner" neurofeedback program, used for ADHD among other things. We have had an interest in neurofeedback as it is also used by therapists when a child or adult is dealing with trauma, however the cost has always been a drawback.

We contacted the NeuroPlus company and they agreed to give us special pricing in return for a review on my blog.

One of the things about the NeuroPlus that appealed to us was the fact that nothing is subconsciously or otherwise entering the brain, as can be the case with some forms of brain therapy. The NeuroPlus measures/senses your body movement and muscle tension which directly impacts how well you can perform the game. When you are relaxed and focused the game proceeds effortlessly but when you become tense or distracted, you lose points. The program is all about teaching your brain how to focus.

When we received the NeuroPlus, there was only one game available and our then 12 year old son grew a bit bored. However at least one new game has come out since we have it.

The NeuroPlus is an asset in training your brain to stay on task. It is not a quick fix, it is estimated that you will have to practice for 30 minutes for at least four weeks before you notice a significant improvement. I think this program has the potential to help many people.

Saturday, April 15, 2017

Affirming The Parents=A Stronger Bond

Children who have trouble bonding and those who have an insecure attachment need to hear people from outside the family praise their parents. Mom and dad can say, "I love you, that is why I don't allow you to do xyz," or "Mom's who love their children keep them safe," but it won't mean nearly as much as when someone else says it. Children who learned early in life that adults particularly mom, are not to be trusted, need constant reminders that mom will keep them safe. However hearing it from their parents isn't nearly as effective as hearing it from people outside the immediate family.

   Yesterday our neighbor was at our place. As we stood outside chatting, Kiana was swinging from a huge vine that was growing in the woods. It broke, dumping her unceremoniously onto the ground. As I held her while she cried, our neighbor said, "Isn't it nice to have a mom who loves you and takes care of you? Some moms don't take care of their children, imagine that?" She and I exchanged a smile over Kiana's head, because this lady is fully aware of the struggles we face in the bonding department.

In therapy Kiana and I have been working on our bond. Anyone else out there dread the hard work of therapy? Her therapist has a gift for using the exact same words Dean and I use when we are working through an issue with Kiana. Many times when Mr D is talking, Kiana gives me a sidelong glace that speaks volumes.

If you are relating to a family with children who are attachment challenged there are a few things you can do to encourage the bond between parent and child. The bonus for you is that once the bond is more concrete and stable, you will have more opportunity to interact with the child. When a bond is fragile, there are multitudes of innocent actions and comments that can deliver a staggering blow to a bond that has been slowly beginning to form. As parents we know it isn't done intentionally but we also know how much work has gone into the bond and how much work it will take to repair damage that was done in unintentionally. That is why we are so very protective of our children's interactions with others.


-Always affirm mom and dad (even when you don't really agree with their way of handling a situation)
-If a child asks for a drink, snack, or wants you to read them a book and the parent is present, send them to the parent. The parent will know if it is "safe" for little Johnny to sit beside you for a story or not and they will guide the situation accordingly.
-When you see the parent helping their child, a comment such as, "Your mom/dad does such a good job taking care of you," may be just the words needed to strengthen the bond. A word of caution, don't say it if you don't mean it, our children are masters at sensing artificial words/actions.
-If the child asks for permission to do something while in the presence of his parents say, "That would be a good question to ask your mom/dad." Our children are good at getting things that they know are against the rules from other adults. They also know which adults mom and dad are willing to stand up to and which one's their parents will tend to avoid a confrontation with.
-If the child is being ornery for their parents, don't try to draw them out of it. This can be helpful for the well attached child, but not for those who are not fully bonded. The child will assume you are on their side thus against mom/dad and this will only feed the fire. The best thing to do is simply ignore the child, he will quickly sense whether or not you are willing to engage in his silent fight against mom and dad.

We have had situations where a child was really having a hard time with the relationship necessary between a parent and child, when someone stepped in and said something like, "Isn't it nice to have a mom/dad who knows just what you need?" The child gives us a sheepish grin and we silently bless the speaker.  

Monday, April 10, 2017

Complex Disability - Life With FASD

Jeff Noble shared this quote on his FB page:

 "FASD is devastating. What disability results in sufferers being good at small talk, but without substance? Then add a kind heart but a violent temper, complex needs, but no insight, a small frame with big expectations and perhaps worst of all, a damaged mind but a beautiful face."- Elizabeth Russell

This perfectly sums up Joseph except for one thing, "a small frame." Many people with FASD have small stature for various reasons, although there are some like Joseph who do not fit that part of the picture.

"Good at small talk, but without substance," Joseph is excellent at small talk. He can carry on a conversation with anyone. The trouble is, he often has no idea what he is saying, he is simply repeating what he has heard others say. This leads to people expecting him to be as intelligent as he sounds. They don't realize that just because he uses a word doesn't mean he knows what it means. I remember reading somewhere about a child with FASD who was in therapy. His therapist explained that he will not be allowed to go on a family camping trip if he doesn't change his ways. He didn't change and when his therapist asked him why, he admitted that he didn't know what camping was. Which was why he didn't have the incentive to try. The moral of the story is, "make sure your child understands what you are saying." Let me add that this is not necessarily appropriate actions to encourage better behavior for someone with FASD.

"Kind heart but a violent temper." Joseph is very kindhearted. He cares for those smaller and weaker than himself and it isn't unusual for him to be upset when he knows someone it having a hard time. The flip side is his temper for which he has no brakes. Like many with FASD, he tends to cycle through times of calm and times of rage. When it is "rage season," we all hunker down and do our best to wait out the storm.

"Complex needs, but no insight." It took me a bit to figure this one out. FASD is complex, no doubt about that. I think Joseph's lack of insight into situations, is what makes caring for him emotionally so difficult. 

"Damaged mind but a beautiful face." Behind the chubby cheeks and winning smile, is a brain that is severely, permanently damaged. Sometimes I look at Joseph and wonder what his life would be like if only his mom hadn't drank. I admit it takes accepting over and over again. In my bitter moments it is hard to see the bright side but there are always those times when I feel blessed that God saw fit to allow us to parent a child like Joseph.

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Saturday, April 8, 2017

A Glimpse Into Our Life

On Monday Kiana had an appointment with a Lyme specialist. Her PANS doctor was willing to treat her but we came to the conclusion that she needs more help than he could provide so I began calling doctors trying to find help. I heard, "She is too young," and "We are not accepting new patients," time and time again. Thankfully I found a doctor and he only had a two week waiting list! 

Enjoying one of the few smiles we get from this girl these days. We mostly see black, clouded eyes filled with tears of frustration and rage.

Daddy patiently trying to help Kiana work through an issue...can't even remember what it was. She finds life very hard right now.

My method of coping with things that are beyond my control and comprehension is to read up on it and inform myself. These two books came in the mail today. The first one is a personal Lyme story and the second is what Dean refers to as a "textbook." It has a wealth of information that I am trying to force feed into my brain.

Dean smoked some delicious ribs the other weekend. We all enjoyed them even Lia who doesn't like spicy food. Joseph wasn't impressed with the idea of having to work so hard to get such small pieces of meat off the bones.

Dean smoked pork several times over the past few weeks. I have quite a stockpile in my freezer. We enjoy it on sandwiches or over fries and topped with cheese sauce, onions and bbq sauce.

I am the class mom for Kindergarten so I had the privilege of driving a van load of 5&6 year olds to Hands On House the other week. They were quite the lively bunch and oh, the discussions they had! I am still laughing.

We carpool with two other families so when I took I the school van to the next family, Kobi went along because my plan was to walk home. I often take him on walks but never along a busy road. He firmly planted himself on the road and refused to budge. Thankfully I had my phone along so I called Dean and he came and picked us up. Kiana and Lia thought it was hilarious, it took me a bit longer to see the humor in the situation.

Saturday, April 1, 2017

How To Encourage A Family Who Has Disrupted An Adoption

When we disrupted B's adoption I craved empathy, I longed for a shoulder to cry on and cherished the words, "I am praying for you." Many people find it hard to relate to someone who has disrupted an adoption and rightly so, disruption is a complex thing. Something that is not easily understood even by the people who are doing the disrupting!

I remember wishing we could have a memorial service of sorts for our son because it felt like he had died....except he hadn't. Our dreams were dead, empty things now that we knew our little boy wouldn't thrive in our home and how that hurt! I remember sitting in our camper at Penn Valley (a conservative christian adoption retreat) and feeling bitter and angry about our situation. I felt like nobody understood, here was a group of people celebrating adoption and we were deep in the pain of disruption. I heartily wished we had just stayed home. I called a friend who has walked a similar path and poured out my heart to her. She assured me of her prayers and as we talked, she guided me into a better frame of mind. 

God heard and answered her prayers and that afternoon through a God ordained event, I was blessed to have a group of friends encircle me while I cried. Having someone come alongside you when you are in deep emotional pain is priceless. Those tears were the beginning of a long path to healing, something that is still a work in progress.

Why do I share this? Because I am becoming aware of just how many family's are out there facing disruption all alone. Many parents make the decision to disrupt not because they are mean or vindictive, or even because they are tired of living the restricted lifestyle necessary when parenting children with intense behaviors. They disrupt because they truly believe the child will do better in another family. Perhaps the child needs a fresh start, many of these children make life very miserable for their family and when they begin to heal, some are unable to move past what happened. Other family's run out of money, some have younger children whom their child preys upon, still others are in poor health due to years of stress and chaos. These parents love their children, in fact they love them enough to lay aside their desire's and focus instead on what is best for their child.

Chances are good that you will come in contact with a family who has disrupted an adoption sometime and when that happens, offer your support. It may not make sense to you but that is okay, we don't have to agree with the choices others make in order to support them. A hug, gift, note or a few words of encouragement may be what makes the day bearable for a family who has made a decision that they never dreamed they would have to make.