Monday, May 29, 2017

Things We Are Learning

- If you put dry macaroni in the microwave for several minutes it will melt the paper container and begin smoking making the house smell horrible.

- Never prescribe Prednisone to someone with Lyme disease, especially when the Lyme is attacking the brain. 

- Don't laugh when the therapist reminds you that taking a child off ADHD medication may cause an increase in E.R. visits. (and no, we haven't had any instances that required medical attention but we have had high spike in "accidents")

- Fireworks will remind some children of gunshots and make them panic, others will delight in the "fuzzy feelings" gained from the booming and sizzling. Still other children will need to sleep on the floor by mom and dad's bed to feel safe.

- It is lovely having dad home for the first several days of transitioning into summer vacation. When he goes back to work tomorrow we are sure to suffer from withdrawal.

- Some children with FASD rely visual memory which is why they can point out their siblings mistakes but never take the blame for their own misdeeds. Thanks to Ann Yurcek author of Tiny Titan for sharing that bit of insight. I was reminded of the time when we were asking Joseph about something he said, his reply was, "I didn't hear myself say it!" Implying that since he didn't hear himself say the words, he never said them.

- One child wishes she was "born in my belly so that I could sell her to her birth mom." I think we need to do some adoption educating! :)

- Placing a raging child in the shower can calm them down in a hurry. Can't wait until the pool is open as swimming is the best antidote for rages.

- Requiring siblings to sit near each other is asking an awful lot of them, asking them to share air space is even worse.

- Making big decisions isn't as fun as it looks. As Tristan said, "I wish I didn't have to decide such big things!" I informed him that making tough decisions is part of being an adult, "Welcome to the adult world, buddy!"

- Continuing on the decision making topic, making life changing decisions does not get easier. Neither does the unsettled feeling of wondering if we are making the right decisions, but knowing God has been faithful in the past gives one a deep peace and comfort.

Wednesday, May 24, 2017

Summer Vacation Has Begun!

Another school term is now history! I can't wrap my mind around how quickly time flies, although there are certainly times when it creeps at a snails pace. These past weeks have been anything but easy as the children face another loss. Emotionally healthy children with secure attachments look forward to another teacher, life is exciting for them. Our children on the other hand fear change. As long as things remain the same, they feel a bit more in control of their circumstances. The end of the school term means losing a teacher, their daily routine and facing a whole summer full of unknowns. This triggers their fight or flight response and trust me, their survival skills are alive and well!

Kindergarten graduation.

We stopped at Mac's on the way home. There were tears before the children even climbed into the explorer, so I figured grabbing lunch on the way home and then immediately going for naps/quiet time would be the best way to fend off the pending storm. 



And now we are on to bigger and better things like sleeping in, swimming and being lazy! :) Other years I made chore charts and was dreaming up ways to make our days as productive as possible, this year I haven't even given such things a thought. Not sure if that means I have finally reached the place where I take each day as it comes or if I am just lazy.

                                     Happy Summer, folks!

Friday, May 19, 2017

Psychiatrist Appointments & FASD

Many psychiatric medications require a patient to see his doctor prior to receiving a refill on his meds. While I understand the reason behind this, when your child has FASD, visits to the psychiatrist can be daunting for both him and his mother!

First there is the problem of finding a psychiatrist who understand's FASD/trauma and who doesn't simply prescribe one medication after the next. It is also very helpful to have a psychiatrist who truly has your child's best interest at heart. Most psychiatrists have a wait list, anywhere from a few weeks to many months. Then you often have an intake appointment after which you schedule an appointment with the psychiatrist. At that appointment he will prescribe a very low does of the medication he feels is necessary. This dose is intentionally low, because they need to see how you react to it. This is especially true for someone with FASD, as their bodies metabolize medications differently. A few weeks or months later you see the psychiatrist again and he will tweak the dosage or add or subtract medications. By this time it is easily a year since you first began seeking a psychiatrist and if this one doesn't meet your child's needs, you are faced with a decision, continue with a doctor who isn't a good fit, or go back to searching for a doctor as the months pass by.

That is the history behind our hunt for a psychiatrist for Joseph. At first  I was thrilled with this doctor, as the months pass, not so much. The other week it was once again time for the dreaded med check.

I try to keep these appointments a secret as Joseph's anxiety spikes when he knows he has an appointment, however he always figures it out. This is due in part to the fact that his psych doesn't speak very good English, he asks lots of questions that Joseph doesn't understand and naturally he wants Joseph to answer said questions, something he has a hard time doing.

So, we walk into the office and sit down. Joseph sits rigidly on the couch and begins chattering a mile a minute. Due to his anxiety, his words are jumbled and he doesn't complete his sentences making it difficult for me to follow his train of thought and well nigh impossible for his doctor. 

"Joseph, how are you feeling?" I know why they ask this question but honestly, Joseph would say, "Good," even if he was miserable.

"Do you like school?" A quick glance at mom because he doesn't really like it but he knows he should say yes. I smile at him and he says, "Yes."

"Do you have friends?"  Joseph nods and goes on to tell a wild tale concerning one of his classmates, becoming more dysregulated by the moment. 

"Are your friends nice to you?" Another nod, "All except______, he kicks me." 

"Do you tell your parents or teacher when someone hurts you at school?" Joseph of course nods and I sigh....guessing what we will be subject to for the next weeks. Stories of, "Mom, so and so bumped me or this,that and the other person wasn't kind to me so I told my teacher."

"Do you ever hurt people at school?" Another glance at mom because he is remembering the trouble he just got into, "No, I am always nice to people."

"How do you feel about your medicine?" Joseph shrugs, "Good, it makes me tired." So the doctor begins asking questions until I jump in and explain that since he takes his meds at bedtime he associates it with being tired. Joseph pipes up, "I don't see and hear things anymore since I started taking these pills!" I sigh deep inside hoping against hope the doctor didn't understand him. See, Joseph has been asked by many doctors if he see's or hears things that aren't real, a question that confused him mightily at first. In his mind, by telling the doctor he doesn't have that problem, he is offering a vital piece of information, except that he never experienced those symptoms although his comment would lead one to believe otherwise. Thankfully the doctor was busy and didn't comment.

By the time we were finished, Joseph couldn't even follow me to the explorer. He was overwhelmed and his brain was no longer processing information, however just because he couldn't follow directions doesn't mean he was quiet. He sat there telling me every thought that entered his head. I finally told him if he sits quietly, I will turn on a story CD. So thankful for audio books! When we got home I put him down for a nap but the poor boy couldn't function for the remainder of the day.

As I drove, I pondered what the psychiatrist thought about Joseph and I, since Joseph looked to me before answering any questions. This type of behavior is partly what got us in trouble with CPS. When Lia's caseworker came to visit another child of ours would look to Dean or I with before speaking, making it appear like he wasn't allowed to talk without our permission. 

Oh well, we have a few more weeks before we have another appointment! By the way, this is the same doctor that at our first appointment when asked what he wants to be when he grows up, Joseph cheerfully replied, "A butcher!!!" You can read about it here: Psychiatrist Appointments And Kittens, Never A Dull Moment

Tuesday, May 16, 2017

Not Enough Spoons

Last night Dean and I decided our family needs a year off. A year to regroup, a year with no social pressure, a year of peace and quiet. I told Dean I will pray for that opportunity, but he advised me to be careful what I pray for! :)

I follow a group called The Mighty, they spread awareness of the unique challenges people face and how they overcome them. Recently there was a story entitled You Know You're A Spoonie If. Of course the title caught my eye and I knew this was one story I have to read. The author writes that each day she is given an allotment of spoons. Each task requires a spoon and she must decide which things she wants to do because she will not have enough spoons/energy to do even the necessary things in life, much less the fun things. Her description was perfect for where our family is finding ourselves.... we don't have enough spoons to reach around, worse yet we haven't for years and we are burning out due to the lack of spoons.

Dean and I have been discussing ways to "conserve our spoons," and we are certainly open to any advice. Most people advise us to get some time away. But there is one problem, our children are to emotionally fragile right now. Plus, I don't have enough spoons to cope with each day and the thought of dealing with the fall out is too much. The biggest weight of all is knowing my withdrawal is years away from improving and at least some of the children's mental health issues are permanent.

My only consolation is that God knows what He is doing. He knows how our story will end and it will be according to His time and plan. None of the things that have blindsided us over the past years were a surprise to Him and thus far He has faithfully brought us through each day. Most days I can remember to trust and not fear. But there are days/weeks when it is too much and my ability to hope is obscured by pain and I lose my way. 

Today I am thanking God for the sunshine and if you know of a secluded place where families can spend a year healing from trauma, please let me know! :)

Sunday, May 14, 2017

Happy Mothers Day

Today has truly been a gift from God! I realize everyday is a gift, one that to often I take for granted but today has been extra special because my two middle children, the ones for whom this day is always exceptionally challenging, have been having a good day! I told Dean I woke up prepared to batten down the hatches and ride out the storm. The storm never came and I will admit that has me a little uneasy but I will enjoy this foreign thing called "peaceful family life," while it lasts.

Dean bought me a lovely plant for Mothers Day. 

Kiana and Joseph have been making me cards and picking bouquets of wildflowers and ferns. "For you, Mom!" 

Lia and I bought and planted  flowers on Friday. Forget the cleaning!

The past week was full of drama and trauma...who knew Track & Field could cause so much anxiety?

One evening Joseph was nearly inconsolable and none of our usual methods of redirecting him was working. Dean suggested giving him a stack of paper to shred...and it worked!

This morning I was greatly encouraged by the Mother's Day message on the influence of a mother. So often, it feels as though I am just not enough. I am not my children's birth mom and I can't take their pain away, but this morning I was reminded that even though I cannot do those things, my actions still make a difference in their lives. 

Friday, May 5, 2017

A Long Week

This week has knocked me down and trampled me in the dirt. I knew it was going to be rough because I had to many things scheduled so I planned ahead and figured in as much down time as possible.

Monday evening Dean had a meeting at church, which usually sends the children into hysterics because, "Daddy is away and he might not come back and then what will I do?" This time, they did great, there weren't any tears, the girls went to bed without a fuss and I thought, "Maybe we are getting somewhere in the realm of attachment." 

Tuesday morning it all fell apart and I sent Kiana out the door to school in meltdown mode, something I hate to do. In the afternoon she had an appointment with her Lyme doctor. He decided to keep her on her meds for another month or so since she is still somewhat tolerating it. Our next option is daily IV treatment for a minimum of 6 weeks. I want to panic but I keep telling myself, we have done seemingly impossible things before, if necessary we can do it again. Dean took off work early so he could be home when the school children got home from school. Lia was one unhappy camper when she realized mom and Kiana weren't home.

Wednesday I went along on Lia's field trip. I didn't tell Kiana and Joseph I was going along because knowing mom isn't at home ups their anxiety. Somehow they figured it out and by the time we got to school they were both on high alert. Needless to say, I got texts from both of their teachers.

Yesterday Joseph had a follow up appointment with the geneticist. We did some genetic testing several months ago and learned he has a gene mutation. The doctor wanted to see him and explain the results to us in person. Unfortunately for me, there is a Geisinger medical center in Lewistown and a Geisinger in Lewisburg and I got the wrong one. They are over an hour apart so I made the 2 hour drive for nothing. Four hours and over 200 miles later, we were home again. What made it worse was Deans mom came to get the children off to school since I needed to leave by 7:30, which meant mom wasn't home when they left for school. That kicked Kiana's anxiety into high form and when she came home from school, I had an epic meltdown on my hands. I sent out a frantic text to friends asking for prayer because I was beyond tired and not coping. Dean came home a little early as well which was a huge blessing. After Kiana was in bed I was getting Lia ready for bed and she began whining. Dean reminded me, "There was a lot of drama around here tonight." Right. We have discovered that when Kiana is dysregulated it upsets Lia and she reverts to baby like behaviors. If we spend some  one on one time with her and reassure her she is usually fine. I told Dean filling the children's love tanks drains the energy right out of me.

I would love to hear what you all do to combat anxiety. We are hesitant to add anxiety meds to Kiana's regimen but this Lyme/trauma/PANS combo is making her life miserable.

Monday, May 1, 2017

To the Placing Parents in a Second Chance Adoption - A Letter To Parents Who Disrupt An Adoption

Disrupting an adoption is not something anyone ever dreams of when they adopt a child. It is an isolating, painful experience, one that calls into question your morals and everything you believe about adoption. Many times parents are condemned publicly when they make the decision to disrupt an adoption, but once in a while someone comes forward and offers hope and comfort instead of complicating the pain. 

A kind person wrote and sent this letter to the re adoption agency we used. I was thrilled to receive permission to share it on my blog.

To the Placing Parents in a Second Chance Adoption,
I know the pain you feel on a daily basis. You waited and waited for this day and now, you can’t understand why this child, who has lived with you for a long time now, still feels like a stranger in your home. Good days feel like you’re babysitting for a friend, who is never coming to get her child. There is no end in sight. Most days feel like you’re fighting a losing battle, never making any ground when it comes to the destructive behaviors your child is battling. One step forward, ten steps back.
You have worn out the knees in your pajamas, having asked the Lord so many times, “what am I doing wrong?”
 You have made the brave and difficult decision to place your adopted child in a secondary adoptive home and now, you have to endure the hurtful comments from complete strangers who have no idea what life is like for you. They know not the circumstances surrounding this decision. They certainly have not been in your shoes, for if they had, they would know that the heartbreak of losing a child is almost more than a parent can bear, lest it be compounded by the horrible words of others.
Friend, listen to these next words carefully. “This is not your choice.” A friend of mine recently faced the horrible decision of having to take her husband off life support. Her pre-teen daughter blames her for her father’s death. Was this her choice? No. There was no choice in the matter. Sure. She could have insisted that they keep him on life support, racking up millions of dollars in medical debt in order to preserve a life that was filled with pain and misery, or she could allow her husband’s time to be up, knowing the hope of Heaven. There was no choice here.
Likewise, this is not your choice. You have done so much for your adopted child. Those first few months of adjustment are difficult enough, but you threw yourselves into them. The fanfare of finally getting that child home to you was over within what felt like seconds. Rejoicing quickly turned into sleepless nights, terrors, tantrums, hoarding, stealing, biting, kicking and screaming. You knew this would happen. You were trained for this. You pray it’s short-lived. You commit yourself to getting through this with your child and helping him heal. You know it’s what God has called you to do. You quit your job to stay at home with him. You spend your days at occupational therapy, physical therapy, speech therapy, behavioral therapy, ESL classes, doctor appointments, IEP meetings and extra-curricular activities to help him build friendships.
You see enormous progress at school and with friends. All of your friends think he’s just the cutest little thing. They assure you that he is such a great kid and is doing so well for having such a tough start in life, but they didn’t see you and your husband cradling him like a baby trying to keep him from hurting himself as he raged last night. They haven’t seen the hundreds of tear-stained pages in your prayer journal. They haven’t seen the havoc this sweet child has wreaked upon your marriage and how much your other children are suffering through this disruption to their family.
 No, ignorant bystanders, this is not about other children in the family being selfish. This is about their well-being being threatened too, sometimes physically, sometimes psychologically, usually, both.
What you, the parent who has loved this child through thick and thin and let down your guard so you can throw yourself into loving this child like your own, understands is that this is not your choice because this is not what is best for your child. This life? It’s not what is best for him. Is it best for him to be in a situation in which he can hurt other children so deeply that he scars them for life? He also has to live with the choices he makes. Is it best for him to be in a family of [in his mind] villains who stole him from everything he knew? There are some wounds that time will not heal.
 So, placing parents, the same way much of society applauds a woman who has chosen life for her baby, but loves that child enough to know that she can’t give him the life that is best for him, so bravely places her child in an adoptive home, we ought to be applauding your bravery too.
I have not been in your shoes; however, I have been a foster mother who hoped to adopt a child placed in our home. It wasn’t the right fit and our family had to say, “goodbye” to the boy who we threw ourselves into loving like our own.
When you place your child for a second chance, you are suffering a loss for which there is no script. Very few understand that kind of pain. You have lost your child. You grieve that loss like a death, but there is very little support. Very few people understand that this was not your choice.
This was not your choice.
You may not be the right family for this child permanently, but you were the right family for a time. He needed you. You have done the hardest of hard. You have poured yourself into a child who may never understand or appreciate any of it and then, you did what only the bravest can do—you put your child’s needs ahead of your own. You endured heartbreaking judgment and private pain that never ends so your child could have a life that you could not give him. That, my friends, is the stuff heroes are made of!

I pray the author will be blessed for writing such a beautiful letter. It says all the things I couldn't find the words for.