Failed Food Trial

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.

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."

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.

Lindsey

The other day a little girl from down the street named Lindsey came to play with John and Emmalee in our backyard. The next day as we arrived home from something, she came running up our driveway to give John an envelope with a "secret" in it. It read:

Dear John

I really like you

I would like to play

with you. Your the

cutest of all of the

boys.

Lindsey + John

Love,

Lindsey

John Testifies

I just thought you'd like to know that John is in a VERY happy mood today. Both his teachers told me he had a wonderful day. He made a new friend named Jason. And his primary teacher told me that he had the best witness today - he stood up and told everyone how he had prayed and asked God that He take his tummy pain away and HE DID! He's very excited that his stomach is feeling good. He told me that he's never going to tell me again that it hurts and that it's good as new. He must be feeling pretty good today! And wouldn't it be great if he's right? It's very exciting.
.

Boys!

Ok. Things have been pretty stressful around here lately, so I was definitely not laughing tonight. I can at least see that it will be funny at some point in the future - and probably something I can razz John with when he's older.

Tonight I came upstairs to put him in bed. He was supposed to be in the bathroom brushing his teeth. Ted was reading a story to Emmalee in her room with the door closed. Instead of brushing his teeth, John was kneeling at her bedroom door - on beige carpet - trying to caulk it shut with bright blue toothpaste. Took him a while to clean that one up.

Boys!

Looking for a good home

for my dog, Casey.

Hi guys. I'm sending this to all my friends, family and acquaintances that might want or know someone who would want a great dog. He's a 2 yr. old Australian Shepherd/Chocolate Lab mix. He's very sweet, gentle, intelligent and eager to please. He doesn't have any bad doggy habits like chewing, digging, barking, or jumping up, and he is absolutely non-agressive.

The reason I'm having to find another home for him is because I got him from a rescue organization about a year ago to be a dog for my preschool age kids, but it turns out that he'd really rather be anywhere else than with the crashing, banging, yelling chaos that reigns in my house. He has a very sensitive temperament and retreats as soon as my kids come near. He would be a great companion dog for a single person, an older couple or perhaps a family with much older children. He enjoys being with other dogs and is non-aggressive toward other household pets. His greatest joy in life is going for rides in the car and he loves going for walks.

We think he might have been abused in one of his first homes because he is so very sensitive natured. He doesn't know how to play but obviously would like to. He is truly a great dog and deserves a place to live where he could be happy and be best friends with his owner. Do you know anyone who might fit this description that might be interested?

I appreciate any time or thought you could give to this.

Casey Is Strange

Casey is being freakier than normal this afternoon. He spontaneously (as Emmalee and I were sitting on the couch reading a book and John was playing quietly with a toy) went over to the TV cabinet, and started whining and shaking with his head down. I looked around to see if anything was amiss around the house, but couldn't find anything. The fireplace has given me some fits this morning. A couple of logs insisted on playing lemming and two different ones burned off and fell against the glass (and they weren't far forward, either). Then when I was trying to move them farther back, one fell apart and shot coals out onto the carpet. There's a big melted spot right in front of the hearth. I made double and triple sure there was nothing burning anywhere and the fire is currently behaving itself - yet Casey is now crammed in the corner between the yellow computer cabinet and the stereo cabinet and won't come out even if I try to coax him. He just whines and puts his head down. It almost makes me nervous that there's something going on around here - like a gas leak or something - that I just can't sense.

I mentioned to John how strange Casey was acting and mused that I'd like to know what was upsetting him so much. John answered that maybe Casey wants to go home. I said "to his new home where he won't be sad anymore?" and he said yes.

Now would be the opportune time for a new owner to appear, I think!

John's latest

The other night Ted was getting John ready for bed. John was not wanting to do it by himself and Ted was "talking him through it". Finally, after listening to a lot of detailed instructions John said "Dad, you need an electronic boy who will do what you say."

Today while driving in the truck, I handed John a McDonald's Happy Meal toy that lights up when you put it in water or push on one of its buttons. John of course, knows where the sensors are for the water to light it up so he decided to try it. He said "Mom! This toy lights up with water! I got it wet with my goober and it worked!"

Also, "I don't want to do that" is expressed: "I'm not forward with doing that." Conversely, if he wants to do something it's "I'm forward with doing that."

Emmalee also said a 9 word sentence today (I've had to start counting to see what the longest ones are). It was "I want to go in there and see John." Amazing!

How to tell others

I'm trying to figure out how best to present my son John's condition to the world. I know that it should be in a factual, unapologetic way - but how do I determine who really needs to be told and how do I present it? I don't want everyone looking at him and me with pity in their eyes. I want them to see him as John, not "that poor autistic boy".

A technical description...

Quote regarding an air purifier: "It runs to testicle machines with lots of wires."

I think he meant "technical."

P.S. The reason we were discussing air purifiers is because his is all apart on the counter because it can't seem to purify all the Play-doh that got stuffed into its vent.

Nights Winters Years

Carolyn and I try to tell real-life stories to John. He loves stories of all kinds, and we want to intersperse the fairy tales and childrens books with a little bit of family history.

Carolyn was upstairs putting Emmalee down for a nap when I started to tell John stories about some of my Thanksgiving memories.

I began, "When I was a little boy, I would go with Aunt Carrie, Aunt Annie, and Gramma D every Thanksgiving to Great Gramma Emma's house."

He stopped me: "Where is her house? I want to go. I want to see her."

I was completely blindsided. Carolyn and I have told stories of her father and my grandmother before, and he's always listened with interest, but he's always understood that these people "aren't around any more."

Tears welled up in my eyes immediately, and a lump developed in my throat.

"We can't go to see her, John."

"Why not?"

"Great Gramma Emma died. She's in heaven now with Jesus."

He put his head down, and thought seriously for what, in John terms, was a long time. He was pondering what I had said.

"But I want to see her."

"We will," I said. "When we get to heaven, she will be there waiting for us."

"But I want to see her now"

"We can't. But we have pictures, and we have stories and memories."

"I want to see her house"

"We can't do that either."

Later that day, he told Grandma Karen that he was afraid that Great Gramma Emma would not be able to find us when we got to Heaven. She reassured him that we would be able to find each other when that time comes.

He's still pondering that huge, adult concept of death and what comes after. He's not hurting -- the loss is too far removed from him to cause him pain. But he's puzzled, and trying to understand.

The questions of a child very quickly point out the essence of our faith. In the adult mind, there are many thick layers sitting atop it. There are esoteric debates over terminology. There is emotional baggage. There are memories, hurts, dogmas, wishes, points of contention, confusion.

But explain it to a child, and the heart of the matter is very clear.

John Update

We spent 6 hours at Riley Children's Hospital on Saturday -- Carolyn, John and I -- because John's abdominal pain had still not been diagnosed, and because now he had a fever. His cardiologist had warned against complacency with unexplained fevers; risk of an infection traveling to the heart is still elevated. Our family doctor's office had referred us to Riley Emergency on Saturday afternoon. The doctor at the family practice wanted a CAT scan of his abdomen looking for "growths" or tumors.

Karen watched Emmalee while the rest of us went to Riley. Carolyn and I were pretty sick while driving to Riley. It was such a heart-sickening sense of deja vu.

But, thankfully, we emerged 6 hours later feeling better. It was a rough ordeal for John -- another blood draw, another X-Ray ... but we at last had some answers. Big sigh of relief. And a bit of a chuckle and shaking of the head in disbelief.

As it turns out, John was just feeling poopy. Did you know -- preschoolers can get constipated?

With John's gastroenteritis (stomach flu) in March, and his sinus infection, he was on various medicines over the past couple of months. These medicines, and the original stomach flu itself, messed up his system. It disturbed the normal flow, shall we say. An adult can articulate, and
even diagnose, the problem. Not so a small child.

How could we go this long without knowing it? Because he continued to go to the bathroom -- #1 and #2 -- every day. Did you know that was humanly possible -- to be stopped up and still go? Apparently it fooled the doctors at our family practice. It took an abdominal X-Ray to reveal the cause.

I was sure I would see the black-and-white image of some ingested toy causing all this problem. A Robin Hood action figure firmly wedged in the appendix. Something like that. But no, just a backlog.

Treatable. Unthreatening. Uncomfortable, but mundane. Whew, big sigh of relief. Thanks for all who showed their concern for John. Hopefully he's on the road to feeling better.

It's Hard To Make A Stand

John likes music. He's been enjoying a Sheryl Crow CD lately. One of the
songs on it has the repeated line: "It's hard to make a stand..."

John was cutting out comics from the Sunday paper, just for fun, right
before bed last night.

The CD ends, and Carolyn says, "John, it's bed time."

He looks at her. "No! It's cutting time!"

She persuades him to go upstairs to his room. Once there, he starts to
play with toys instead of getting ready for bed.

Carolyn again chides him, this time to the tune of the Sheyrl Crow song.
It has the same number of syllables: "It's time to go to bed..." to the
tune of "It's hard to make a stand..."

He looks at her, and counters, in the same tune:

"It's time to play with toys..."

John Update

Not much of an update, but such as I have I will give thee.

The symptoms continue. They are not constant, but he does have them at least once a day. He's not unhappy or out of sorts.

The blood tests all came back normal. Carolyn is going to try to get him in to see the doctor today for a hernia check, and for a urinalysis.

We will keep you posted.

John Update (Stomach Pain)

Here's the news on John's health.

Today's News:

We're taking John to get some tests run at the Hospital tomorrow. He has not really been his energetic self since he had his bout with stomach flu in March.

Periodically he has complained of stomach pain. >From time to time he says "I don't feel good." We find him putting his head down for a brief break while at play. Even at his swimming lessons he made his way to the side of the pool and put his head down.

Lately, he has even grimaced while telling us his stomach hurt. And, he says, his back hurts. He complained of his chest hurting right after the flu, and the doctor thought he heard some bronchitis. But by now he has completed a 15 day course of antibiotics, and has no sign of bronchitis or upper respiratory infection.

When he complained of his tummy and chest hurting, he was checked for Mono, and the accompanying enlarged spleen. Because his dad was diagnosed with it recently; it was considered a possibility fhat these mysterious abdominal complaints were related to Mono. But the tests were negative.

Have you ever heard of a 3 year old complaining of back pain?

We're taking him to the hospital to get a complete metabolic lab done tomorrow. It means drawing blood, which is traumatic. They are looking for things like a thyroid problem, etc. We have no way of knowing how serious the pains are, except to judge John's behavior -- and he is clearly not his happy post-surgery self.

Your prayers are appreciated. We will keep you posted.

Mr. Lion

Mr Lion certainly has an auspicious position in John's life. He's the chief of all stuffed animals. Others may come and go from his bed, but Mr. Lion is always there. Lately John's been attempting to prolong his nighttime ritual (Can you sing me one last song again? Can you sing another one last song?) But I tell him no, it's his turn to sing Mr. Lion to sleep. Mr Lion's favorite song, by the way, is Twinkle Twinkle Little Star.

Little Sister

John loves having a little sister. She smiles whenever he walks into the room, and he just beams. It's been an adjustment for him, but he's doing great. And she's such an easy-going baby. Smiles all the time. John was never that way.

Open-Heart Surgery

John came through his open-heart surgery just fine. He underwent surgery yesterday to repair a large hole between the left and right ventricles of his heart. He was in surgery for about 4 hours. He's in intensive care, but may be moved out of ICU as early as this evening. Mostly he wants to get up and explore, and would -- if he could just free himself from the wires and tubes attached to him.

Thanks for all your prayers on John's, and mom and dad's, behalf. Please continue to pray for a complication-free recovery. I'll send further updates as time permits.

Before I was a mom

Before I was a Mom

Before I was a mom.............
I made and ate hot meals.
I had unstained clothing.
I had quiet conversations on the phone.

Before I was a mom
I slept as late as i wanted
and never worried about how late I got into bed.
I brushed my hair and my teeth everyday.
Before I was a mom
I cleaned my house each day.
I never tripped over toys or forgot words to lullabies.

Before I was a mom
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.

Before I was a mom
I had never been puked on
pooped on
spit on
chewed on
peed on
or pinched by tiny fingers

Before I was a mom
I had complete control of
my thoughts
my body
and my mind.
I slept all night.

Before I was a mom
I never held down a screaming child so that doctors could do tests or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a mom
I never held a sleeping baby just because
I didn't want to put it down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew something so small
could affect my life so much.
I never knew that i could love someone so much.
I never knew i would love being a mom

Before I was a mom
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a Mother and her child.
I didn't know that something so small could make me feel so important.

Before I was a mom
I had never gotten up in the middle of the night every ten minutes to make sure all was ok
I had never known the warmth
the joy
the love
the headache
the wonderfulment
or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much.............
before I was a mom.....