Friday, December 14, 2007

Ask the Doctor

I had one of those confusing days yesterday. I couldn't even sort things out enough to write about my specific questions. But today I was able to call Dr. T at NIH and ask him some very specific questions. His answers have helped me understand things better and eliminated much of my confusion. I thought it would be good to write them out here so that I have things written down and so that those of you who are interested in more specifics can get some information this way.
Bear in mind Dr. T's answers are the best I can remember and are coming through the filter of my brain, but it's what we have to work with.

Q: Yesterday Cadi had some pretty bad behavior but couldn't seem to understand that her behavior was tied to the consequence of losing privileges which she was indignant and angry about. The phrase "Everything I do you blame on me" sums up her attitude and the extent of her understanding of the situation. It seems like she is missing some important connections here. What do you think this is coming from?

A: There are some areas in which Acadia is developmentally immature, and other areas where she is on target, or close to target for her age. This is one of those areas where she seems to be immature. You would expect this kind of thinking and behavior from a four year old, but not a 9 year old. Acadia has a social deficit or immaturity in her understanding of responsibility for her actions.

Q: You have mentioned anxiety as a probable cause for Cadi's anger, irritability, and oppositionality. In your experience with other kids, have you seen anxiety present this way?

A: Yes, often. I can relate it to being like a timid animal. When you first approach it, it will run. If you get closer, it will freeze. If you try to touch it, or force it to do something, it will fight. When Acadia is faced with something she is being asked to do, she is not saying, no, I can't do that because it's too hard or too scary for me. She struggles with that capability to express intense feelings with words when she is in the middle of them. She is just fighting, desperately.

Q: We've talked about Acadia having a developmental language problem in not being able to express things using language. What about the times that she has talked about her feelings, such as in a therapy session where she is motivated with candy?

A: The fact that she has to be motivated by a piece of candy for each sentence, actually demonstrates that this is a problem. Food is a very base level motivator, we use food to train animals to do what we want them to. A 9 year old should be able to volunteer at least some basic information about their day or their week, and then maybe work towards more expressing more personal feelings, but shouldn't have to have such a base level motivator to use language.

Check the Care Page for more about Cadi's status, meds and our plans.

Time to make a quilt!

For generations, the women in my family have made quilts. We have made baby quilts, and quilts to pay the midwife for delivering babies. We have made cozy comforters and beautiful wedding quilts. We make quilts to show our happiness, our gratitude, our acceptance and love, our compassion, and prayers. It is an all out project, something you must throw your whole self into. Something you ignore the housework to finish, and hurry to meet the deadline. You feel like you are doing something, even when there is nothing you really can do. When we finish, we vow not to do that again for a long time. At least until our hearts are full or breaking again. Then we will pour them into the washer with the new fabric and soap. We will wash, dry, and iron out all the wrinkles that we don't understand. We will cut them into pieces that make sense, that follow a pattern. We will piece them together to express our love and our hope, and feel like we are beginning to arrange our deepest thoughts and feelings. When all is done and sewn we oooh and ahhh and show everyone that comes in the door. We did something, and it's beautiful. Then we fold it up and take comfort in the bigness of it, the weight of it in our arms relieves the weight in our hearts. We give it away, the way we give our love to those who will cuddle up in the quilt.

This is Acadia's quilt. I helped make it, but it wouldn't have happened without Alan and Reita's help. They stepped in and became my quilting family this time, and I am so grateful to them for doing this with me.

The Psalm 139 Mermaid Quilt has verses from Psalm 139 illustrated by a little mermaid stick figure who is thinking about the presence of God as she "makes her bed in the depths", "travels to the far side of the sea" and "numbers the grains of sand".

Here is the quilt on Acadia's hospital bed ready to comfort her and remind her of the presence of God no matter where she is or what she is feeling.

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Craving Answers

I have gone through Thanksgiving and the Cawley Christmas party without a mixer. I got my husband to whip the cream with a whisk and I made frosting in the food processor. It was not perfect but it was okay. I also went through Thanksgiving and the Cawley Christmas party without Acadia. Of course it was easier, I didn’t think too much about it, and it was okay. But if I do think about it, it’s not okay, it’s awful. I do sometimes feel guilty about leaving her there. Not the kind of rational, believable guilt, just the aching that feels like it must somehow be wrong. Especially when she calls, like she did tonight, and begs to come home. She said it’s the most horrible place in the world.

The thing is, as much as it hurts to hear her so upset and homesick, she has said all of those things about home too. I am pretty sure that if she was home right now, she would be fighting me and calling me stupid and cruel like she is doing to the nurses tonight. So I know that home is not THE answer, although I want her to come home as soon as possible. THE answer, of course is not just one answer, but I am feeling rather confused again and wanting more definitive answers. That is, after all, why we are doing this whole thing in the first place.

Thursday, December 6, 2007

WARNING: flags

I'm brooding. So much so that I took a picture of myself brooding and now I'm going to blog about it. I have my pathetic moments.

That being said, the document in my hand is a 25 page detailed account of Acadia's moods and behaviors for 2003-2004. The fact that I have this information documented proves that I was more desperate for answers for Acadia than I was depressed, and so I wrote down whatever I could whenever I could. The good thing is that I have all of this to help me now. Cadi's doctor at NIH requested some more information surrounding her experience with Prozac. And I have it. The little green flag says Prozac. The orange one Wellbutrin, the pink one Depakote, and the green one you can't see, Ritalin. These are not only post-it flags to me. They are bright warning flags. WARNING: this is a powerful drug that can alter your child's brain. WARNING: even though this drug has worked for many other children, it will not work for yours. WARNING: you have only begun the list of medications you will try in your desperate attempt to find help for your child. WARNING: your child is very ill and needs help. WARNING: all these warnings mean nothing, three years from now you will still be looking for help and searching for answers.

Don't get me wrong. I am not against medication. And I have always guarded against putting my hope in a magic pill. My hope is in God. But I am at one of those turning points again. A new chapter is beginning in our saga and as I read through the old chapters they look sadly familiar. "Wow, she was doing that when she was four and she is still doing it?" Acadia is totally off medication for the research program, and she has even had things start again that we hadn't seen for a couple of years. She is chewing on everything again, constantly. She is very hyper and distractable. They say she is a different kid from the one who arrived a month or so ago.

I am going to see her tomorrow and mother her the best I can in this situation. I am going to hand this flagged document to the expert and put a little bit of my hope in the possibility that he will have some answers for me soon. If he doesn't, if the new meds still don't work, then what? We will go on. Our therapist says we can't go on like we were, but if that's what we have to do then we will. Sometimes you don't get to make that choice. We will go on living and loving as families do; always looking for whatever help comes next, in whatever form that takes.
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Wednesday, December 5, 2007

Reformation Day Faire October 31, 2007

We went all out celebrating the Grace of God at our Reformation Day Faire this year. It was a lot of work but I do love to throw myself into a big creative project, and it was great to watch the kids having so much fun! They played games related to the life of Martin Luther and earned coins to trade for candy at the marketplace.
Some of us dressed up in medieval costumes, but we had some fairies and spider(men?) too. Acadia was an archer, and Lily was a princess. Unfortunately I erased the pictures I took of my girls in their costumes. Arggh! Sometimes our memories have to come from something other than pictures, right?

Celebrating Reformation Day is so much different than trying to ignore Halloween, or having a "harvest party" instead. We are not saying "Yeah, everyone else is doing something fun tonight, but were not doing anything because it would be evil". Instead we are telling our children "We have something important to celebrate tonight, and it's different from what the world is celebrating. The Grace of God is so important that people gave their lives to make sure that you could know and understand it."
The Bible and Jewish culture are full of feasts and celebrations and the Lord wants to celebrate with us! I think it is no coincidence that Reformation Day has been hidden behind Halloween for so long. October 31st was the day that Luther posted the 95 theses on the Wittenberg door. The ring of that hammer has echoed through history as the reformation was born. But as Christians we tend to focus too much on the evil we want to avoid, and not enough on the fullness of all that we have in Christ. "The just shall live by FAITH" was the simple truth that changed Luther's life and then the whole world. And it's a very good reason to PARTY! Whoohoo!

The little bumble bee was fascinated with the "fire".

No, it's not Snow White's wicked stepmother. She doesn't have that evil white complexion. It's a medieval queen of course!

This was the guy you were supposed to avoid. John Tetzel. He went around selling "indulgences" which were pieces of paper that said your sins were forgiven. Yep, you could pay your hard earned coins to BUY God's forgiveness. Sound kind of twisted to you? Good! Martin Luther thought so too and this was one of the things he spoke against in his 95 theses. Of course you can't BUY God's forgiveness, but many people in Luther's time did. And I'm sorry to say that many of our kids fell for it too! We had to start warning them not to buy anything from that man with the papers! ( I drilled my own kids at home later, "No Mommy, we didn't buy any!")