Well, we just got back from Cincinnati and we don't even have to wait for the biopsies. John clearly failed eggs. The doctor could see it quite well. We'll have to wait 3 - 4 weeks for his esophagus to heal before we try anything new.
We're totally not surprised but bitterly disappointed. He loves eggs so much and they make his baked goods so much better. I was hoping to be able to bake better bread for him - including hamburger buns, etc - but they just turn out gooey without eggs. And they add such a richness to everything... It's a hard loss.
I even asked if in the future when we're not doing these trials anymore, could John have an egg once in a while. The answer was an unequivocal no. Even if he doesn't feel pain, the condition is there and causing lesions in the esophagus which can contribute to scarring. Enough of that and it could start causing problems with swallowing, etc. I guess they're out forever.
However, we're so glad to still have his milk products. When he started having pain during this egg food trial, I cut out yogurt, cheese and sour cream because I was afraid the enzymes in them might be contributing to the problem - but the doctor said no. (I hadn't tried those products during the milk food trials because it would have been too painful to withdraw them if he failed.) So now he gets those back and he's very happy about it. It kind of mitigates the loss of the eggs. And we still have ice cream!
And since Emmalee hasn't been having any pain for several weeks, the doctor told us to cancel her January 10th scope and wait to see if the problems resurface later. It would be pointless to scope if she's not experiencing any problems. I'm glad we won't have to put her through it again - or pony up the money for a scope so soon in the new insurance year! Whew!
Also, John handled this scope quite well. The anesthesiologist has tried adding another drug the last two times and it has really helped him to wake up without the rage and delirium. He also upped John's pre-op dose of Versed - which makes him loopy and hopefully less combative. Last time they didn't give him enough and it took four people to hold him down to put the anesthesia mask on. He remembered too - He planned his counterattack this morning by smuggling plastic forks in under his shirt to throw at the people who would try to put the mask on him!
What a kid. He announced to all - after we confiscated the forks - that he was going to fight as hard as he could. They didn't mind. The doctor's only response was to smile and say "Good plan." This time it only took two people to hold him down. Much better. =) They were all awesome with him right down the line (they always are). Cincinnati Children's rocks.
Thursday, December 29, 2005
Wednesday, April 06, 2005
Cycles
Our life goes in cycles, with patterns of ups and downs. I'd characterize the current period as a down, given Carolyn's and my lack of sleep, stress levels, and the negative behavior of our autistic son and terrible-threes daughter. But mostly our son.
Last night was a particularly bad episode, which involved deliberate poop "accidents" (an oxymoron), poop on the hall carpet, poopy toilet paper all over the bathroom, crusted poop on his back, poop on the bedsheets, and an attempt at a poop-on-demand soiling of the comforter.
This, despite all my protestations and disciplinary actions, was the culmination of the crescendo of misbehavior.
Tonight it was me and John alone, and a pattern of misbehavior began again. He threatened to fire me as a dad. He told me I was the meanest person in the world. He threw food at me and spit rice milk on the leather couch.
I made him get a paper towel and wipe up the mess he made. He wouldn't do it and tried to hit me when I came near him.
I said I missed the old John. It's not like I premeditated on it, decided to lecture him. It was a unplanned wretching of my spirit. I said I missed the old John that was helpful and respectful and did things to help me and didn't spit at me.
John was pierced to the heart. He teared up and said, "I miss the old John, too. I don't know if I'll ever see the old John again." He wailed.
I had no idea my words would affect him so profoudly, more profoundly that any "time out" or other discipline.
"You need to make the right choices," I said.
"No," he wailed, "Once you turn into something, you can never turn back. I can never be the old John again."
He wailed openly. Not the cry of a child who has felt a parent's discipline, but the mournful cry of a broken heart.
I motioned for him to sit on my lap. He complied.
"Well," I said, "I want you to know that I love you every day no matter what. I loved you before you were born, when you were still in mommy's tummy. I loved you the day you were born and every day after that, no matter what you do."
He listened.
"And it's true that you can't go back inside mommy's tummy and be a baby again. You can't go back to being a 5 year old, or 4 or 3 or 2 or 1 year old. But you can make good choices again."
"But I don't know how to make good choices," he was crying again.
"You know what the Bible says we should do? The Bible says that if we confess our sins to God, He is faithful and just to forgive us our sins and cleanse us from all unrighteousness. That means that if we tell God that we sinned, and repent, he will forgive us, and His blood will wash us on the inside and we will be clean again. And, if we ask him to help he will help us."
Sniff. He listened.
"Does that sound something we should do?"
"Yes, Dad, would you do that for me?" He said.
"I can't do it for you, but I can do it with you. Will you pray with me?"
"Okay, Dad," he said, tears heavy on the voice.
"Dear God, thank you for this day, and thank you for my wonderful son John. I am so happy that you sent him here to live with us, and that you chose me to be his daddy. I thank you for the chance to be his daddy. I thank you for him. God, John feels bad about some things that he did and wants to pray about them."
"God, forgive me for..." I began.
"my bad choices," John said, "for not doing the right thing."
"Help me to..." I began.
"make good choices, and do the things you want me to do," he finished. "And to help mom and dad when they ask me so I can play with rockets and help dad fix the motorcycle again."
Mid-prayer, and I'm crushed; I myself am pierced to the heart. He thinks I've not been with him lately because he's been bad; he doesn't understand a busy work schedule and studying for my certification. He only knows that he never gets to play with dad anymore. Run through my own heart with a hot poker.
"And God, forgive me," I said, "for my lack of patience. For being so busy that I didn't take enough time for my kids. Help me to be a better daddy. Help me know how to help John to make good choices."
"and we'll give you the thanks and the praise, in Jesus name, Amen."
"John, this is a good thing, this is very good. You have been forgiven and cleaned by God." He smiled meekly.
"John, I have to tell you something. I want you to know that we didn't stop playing with rockets because you were bad. We stopped playing with rockets because it was winter time. I don't want you to think I'm punishing you for being bad."
"Okay, dad," he said, "I won't." He is always very literal in his interpretation of my sentence; he heard me say "I don't want you to think x" and he replied, "I won't think x". A more figurative thinker, or an adult, would've replied, "I know", meaning "I know you're not punishing me."
"But I don't know why I make bad choices," he said.
"Learning to make good choices is part of life, it's part of growing up." I paused. How can I better answer the question, "Why do I do bad things?" Do I launch into an explanation of the fallen nature of man? Do I talk about why John's own impulses to negative behavior might be stronger than others.
"Do you know what autism is?" I asked.
"No. I don't know what autism is," he replied. I note the specific words he uses in his reply. Not "No, what is it?" but rather "No, I do not." I don't think I'm imagining it; I think at his 6-year-old level, he wants to know but is afraid to ask.
"Autism means your brain is wired differently," I said. "A person with autism has a brain that works differently from other people. And things can be hard for an autistic person, because the world is set up by people who don't have autism. Some things in this world are not very easy for a person with autism to handle."
"A person who has autism isn't bad, just different. One in 166 babies born have autism," I said.
I grasp for an analogy that he will understand. "Do you know about right-handed and left-handedness?"
"No," he replied. Not effective as an analogy if he's never heard of it.
"Most people use their right hand to write; some use their left. It doesn't mean that left-handed people are bad, it just means they are different. It's the way God made them, like he made their eye color and hair color and the shape of their face."
"Oh."
"And do you know who has autism?"
"No."
"You."
He thought about this, curled into my shoulder and cried. "I wish I had a brain like you."
Once again, I'm run through with pain like a hot knife.
"Well, you know, I have a brain that's a lot like yours," I say.
My mind is racing. Do I try to explain the continuum, the spectrum of autistm? Do I explain that there is no such thing as normal, that lots of people have differences in their brain, that some people who aren't autistic have certain strong characteristics of autism.
I recall the words of the psychologist I visited in early 2003, who said to me, "I have no doubt that you are on the autistm spectrum."
I said to John, "In fact, in our whole family, my brain is probably most like yours. I'm a little bit autistic, too."
Silence, but the frown lifted a little. He is deep in thought.
"And you know, lots of people have autism. Thomas Edison, the inventor of the light bulb and the record player and the movie, had autism. The man who invented Windows for the computer had autism. Lot's of very smart and special people have autism."
"Okay, dad."
He was very subdued. Lost in thought. Ruminating on what I had said, and not saying much. He left my lap, moved to the couch, and stretched out face down.
"Are you okay, boy?" I asked.
"Yeah, I'm okay. Can I go to bed now." he asked.
"Sure," he said. I carried him upstairs and tucked him into bed.
"Good night, John."
"Good night, dad," he said.
"I love you," I said.
"I love you, too."
Last night was a particularly bad episode, which involved deliberate poop "accidents" (an oxymoron), poop on the hall carpet, poopy toilet paper all over the bathroom, crusted poop on his back, poop on the bedsheets, and an attempt at a poop-on-demand soiling of the comforter.
This, despite all my protestations and disciplinary actions, was the culmination of the crescendo of misbehavior.
Tonight it was me and John alone, and a pattern of misbehavior began again. He threatened to fire me as a dad. He told me I was the meanest person in the world. He threw food at me and spit rice milk on the leather couch.
I made him get a paper towel and wipe up the mess he made. He wouldn't do it and tried to hit me when I came near him.
I said I missed the old John. It's not like I premeditated on it, decided to lecture him. It was a unplanned wretching of my spirit. I said I missed the old John that was helpful and respectful and did things to help me and didn't spit at me.
John was pierced to the heart. He teared up and said, "I miss the old John, too. I don't know if I'll ever see the old John again." He wailed.
I had no idea my words would affect him so profoudly, more profoundly that any "time out" or other discipline.
"You need to make the right choices," I said.
"No," he wailed, "Once you turn into something, you can never turn back. I can never be the old John again."
He wailed openly. Not the cry of a child who has felt a parent's discipline, but the mournful cry of a broken heart.
I motioned for him to sit on my lap. He complied.
"Well," I said, "I want you to know that I love you every day no matter what. I loved you before you were born, when you were still in mommy's tummy. I loved you the day you were born and every day after that, no matter what you do."
He listened.
"And it's true that you can't go back inside mommy's tummy and be a baby again. You can't go back to being a 5 year old, or 4 or 3 or 2 or 1 year old. But you can make good choices again."
"But I don't know how to make good choices," he was crying again.
"You know what the Bible says we should do? The Bible says that if we confess our sins to God, He is faithful and just to forgive us our sins and cleanse us from all unrighteousness. That means that if we tell God that we sinned, and repent, he will forgive us, and His blood will wash us on the inside and we will be clean again. And, if we ask him to help he will help us."
Sniff. He listened.
"Does that sound something we should do?"
"Yes, Dad, would you do that for me?" He said.
"I can't do it for you, but I can do it with you. Will you pray with me?"
"Okay, Dad," he said, tears heavy on the voice.
"Dear God, thank you for this day, and thank you for my wonderful son John. I am so happy that you sent him here to live with us, and that you chose me to be his daddy. I thank you for the chance to be his daddy. I thank you for him. God, John feels bad about some things that he did and wants to pray about them."
"God, forgive me for..." I began.
"my bad choices," John said, "for not doing the right thing."
"Help me to..." I began.
"make good choices, and do the things you want me to do," he finished. "And to help mom and dad when they ask me so I can play with rockets and help dad fix the motorcycle again."
Mid-prayer, and I'm crushed; I myself am pierced to the heart. He thinks I've not been with him lately because he's been bad; he doesn't understand a busy work schedule and studying for my certification. He only knows that he never gets to play with dad anymore. Run through my own heart with a hot poker.
"And God, forgive me," I said, "for my lack of patience. For being so busy that I didn't take enough time for my kids. Help me to be a better daddy. Help me know how to help John to make good choices."
"and we'll give you the thanks and the praise, in Jesus name, Amen."
"John, this is a good thing, this is very good. You have been forgiven and cleaned by God." He smiled meekly.
"John, I have to tell you something. I want you to know that we didn't stop playing with rockets because you were bad. We stopped playing with rockets because it was winter time. I don't want you to think I'm punishing you for being bad."
"Okay, dad," he said, "I won't." He is always very literal in his interpretation of my sentence; he heard me say "I don't want you to think x" and he replied, "I won't think x". A more figurative thinker, or an adult, would've replied, "I know", meaning "I know you're not punishing me."
"But I don't know why I make bad choices," he said.
"Learning to make good choices is part of life, it's part of growing up." I paused. How can I better answer the question, "Why do I do bad things?" Do I launch into an explanation of the fallen nature of man? Do I talk about why John's own impulses to negative behavior might be stronger than others.
"Do you know what autism is?" I asked.
"No. I don't know what autism is," he replied. I note the specific words he uses in his reply. Not "No, what is it?" but rather "No, I do not." I don't think I'm imagining it; I think at his 6-year-old level, he wants to know but is afraid to ask.
"Autism means your brain is wired differently," I said. "A person with autism has a brain that works differently from other people. And things can be hard for an autistic person, because the world is set up by people who don't have autism. Some things in this world are not very easy for a person with autism to handle."
"A person who has autism isn't bad, just different. One in 166 babies born have autism," I said.
I grasp for an analogy that he will understand. "Do you know about right-handed and left-handedness?"
"No," he replied. Not effective as an analogy if he's never heard of it.
"Most people use their right hand to write; some use their left. It doesn't mean that left-handed people are bad, it just means they are different. It's the way God made them, like he made their eye color and hair color and the shape of their face."
"Oh."
"And do you know who has autism?"
"No."
"You."
He thought about this, curled into my shoulder and cried. "I wish I had a brain like you."
Once again, I'm run through with pain like a hot knife.
"Well, you know, I have a brain that's a lot like yours," I say.
My mind is racing. Do I try to explain the continuum, the spectrum of autistm? Do I explain that there is no such thing as normal, that lots of people have differences in their brain, that some people who aren't autistic have certain strong characteristics of autism.
I recall the words of the psychologist I visited in early 2003, who said to me, "I have no doubt that you are on the autistm spectrum."
I said to John, "In fact, in our whole family, my brain is probably most like yours. I'm a little bit autistic, too."
Silence, but the frown lifted a little. He is deep in thought.
"And you know, lots of people have autism. Thomas Edison, the inventor of the light bulb and the record player and the movie, had autism. The man who invented Windows for the computer had autism. Lot's of very smart and special people have autism."
"Okay, dad."
He was very subdued. Lost in thought. Ruminating on what I had said, and not saying much. He left my lap, moved to the couch, and stretched out face down.
"Are you okay, boy?" I asked.
"Yeah, I'm okay. Can I go to bed now." he asked.
"Sure," he said. I carried him upstairs and tucked him into bed.
"Good night, John."
"Good night, dad," he said.
"I love you," I said.
"I love you, too."
Thursday, January 06, 2005
Conversation with John
I had some Christian music playing today and Emmalee asked me what it meant that "God died on the cross". John started explaining it to her and then started asking me some questions about how people went to hell. You know, John questions like exactly what hell was like and exactly how they got there. Did a metal hand push them there, etc. I told him what some of our concepts of hell are - including "lake of fire" and that some people think it's the complete absence of any presence of God and being completely separated from Him. After thinking about it for a while he said that he doesn't want to go there, he wants to be with God. So I told him that that's easy, we just have to believe in Jesus and ask God to come into our hearts (or something like that - I'm not sure how I worded it.)
So he spontaneously started praying - based on what he'd been explaining to Emmalee about the cross. It went something like this: "Dear God, please let Jesus' blood cover our sins. Amen." He asked me some more questions and I told him about the Book of Life and he's very excited that his name is written there. He very much wants to worship God through music and is excited about being with God.
Is that awesome or what? We've had conversations and prayers before, but I feel like he was really thinking about it and putting it together today. - Especially after his detailed and correct explanations to Emmalee about the cross and its meaning.
So he spontaneously started praying - based on what he'd been explaining to Emmalee about the cross. It went something like this: "Dear God, please let Jesus' blood cover our sins. Amen." He asked me some more questions and I told him about the Book of Life and he's very excited that his name is written there. He very much wants to worship God through music and is excited about being with God.
Is that awesome or what? We've had conversations and prayers before, but I feel like he was really thinking about it and putting it together today. - Especially after his detailed and correct explanations to Emmalee about the cross and its meaning.
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