John has shortness of breath and dry mouth that we now think is related to his Tenex. Those are listed as potential side effects. The onset of those symptoms coincided with his starting that medicine.
That means we'll probably have to switch meds.
That's a bummer because the medicine seemed to be working well.
Friday, October 27, 2006
Thursday, October 26, 2006
Eye Doc
Looks like Emmalee will need to wear glasses for much of the time. Not for playing in the yard, but anything where she'll need to focus near or far away very much - like reading a book or a bulletin board or watching TV. So - most of the time. We picked out some cute frames. They have all the info and I just need to call them in January when the insurance kicks in for her. It'll only be $25 then, as opposed to $160 now.
The doctor needed to dilate her eyes to make sure she wasn't missing any prescription needs since it was obvious Emmalee was having problems both near and far. Emmalee handled it all like a champ. Actually, she was quite amazing. The doctor even commented that she was doing as well as a 10 or 12 year old. She really was, too. She never misunderstood a single instruction. She was incredibly cooperative and helpful. She had no problems reading off letters or determining which prescription was better as the doctor clicked them off. I was impressed. So was the doctor. Pretty cool. She even handled the dilation very well. What a great kid.
The doctor needed to dilate her eyes to make sure she wasn't missing any prescription needs since it was obvious Emmalee was having problems both near and far. Emmalee handled it all like a champ. Actually, she was quite amazing. The doctor even commented that she was doing as well as a 10 or 12 year old. She really was, too. She never misunderstood a single instruction. She was incredibly cooperative and helpful. She had no problems reading off letters or determining which prescription was better as the doctor clicked them off. I was impressed. So was the doctor. Pretty cool. She even handled the dilation very well. What a great kid.
Tuesday, October 24, 2006
Retroblog
I've been putting old blog entries up on this site, some dating back to before John was born. I've enjoyed the trip down memory lane. You might enjoy it, too.
Click on the links at the lower right, labeled Archives. They start in January 1999 and the excitement and anticipation around the birth of our first child.
Click on the links at the lower right, labeled Archives. They start in January 1999 and the excitement and anticipation around the birth of our first child.
Monday, October 23, 2006
McScruffy
The latest in JohnSpeak (tm)...
John asked if he could have an ice cream cone at McDonalds.
"No, sorry, McDonald's ice cream cones aren't on your diet," replied mom.
"Well, how about a McScruffy?" he asked.
"What?!?"
"That ice cream shake they have with candy swirled in it," he replied.
"Oh, you mean a ... what's the word, not a Blizzard, that's Dairy Queen, .... Oh, right, a McFlurry...you want a McFlurry," said Carolyn.
"No, I think they also have a treat called a McScruffy," he insisted.
"Sorry, the McScruffy isn't on your diet either."
Mom and Dad had to swallow our laughter, he was sooooo serious.
John asked if he could have an ice cream cone at McDonalds.
"No, sorry, McDonald's ice cream cones aren't on your diet," replied mom.
"Well, how about a McScruffy?" he asked.
"What?!?"
"That ice cream shake they have with candy swirled in it," he replied.
"Oh, you mean a ... what's the word, not a Blizzard, that's Dairy Queen, .... Oh, right, a McFlurry...you want a McFlurry," said Carolyn.
"No, I think they also have a treat called a McScruffy," he insisted.
"Sorry, the McScruffy isn't on your diet either."
Mom and Dad had to swallow our laughter, he was sooooo serious.
Sunday, October 22, 2006
Saxophone
Emmalee has a homework assignment to bring a bag full of items that begin with the letter "S".
We took a picture of her playing my saxophone. The sax is too big to fit in the bag, so a snapshot will do.
Wireless Networking
This is what I'm thinking of getting:
NETGEAR WGR614 Cable/DSL Wireless 54 Mbps Router
(MPN: WGR614)
NETGEAR USB 2.0 54MBPS ADAPTER 802.11G
(MPN: WG111)
NETGEAR WGR614 Cable/DSL Wireless 54 Mbps Router
(MPN: WGR614)
NETGEAR USB 2.0 54MBPS ADAPTER 802.11G
(MPN: WG111)
Tivo
We got Tivo. We are late comers to the DVR revolution. We got Tivo this past week.
Aunt Carrie swears by it. When I asked my friends at work about it, they were passionate about the benefits of it. They are True Believers.
It was marketed to us by the MOPS organization; marketed as a tool for managing what our kids watch on TV. We are tired of our VCR eating tapes, so we are switching to a digital video recorder that captures the TV shows and saved them electronically, no tapes.
It's pretty cool because you can sign up for your favorite shows and it'll record them automatically, even if the shows are preempted by stupid basketball like they are every other day in the winter in Indiana.
It's the next generation of VCR. Very cool.
tivo.com
Aunt Carrie swears by it. When I asked my friends at work about it, they were passionate about the benefits of it. They are True Believers.
It was marketed to us by the MOPS organization; marketed as a tool for managing what our kids watch on TV. We are tired of our VCR eating tapes, so we are switching to a digital video recorder that captures the TV shows and saved them electronically, no tapes.
It's pretty cool because you can sign up for your favorite shows and it'll record them automatically, even if the shows are preempted by stupid basketball like they are every other day in the winter in Indiana.
It's the next generation of VCR. Very cool.
tivo.com
Monday, October 02, 2006
Father and son time
John rode home with me on the motorcycle. We stopped at Hardees for a milkshake, one of the few fast-food items that are on John's diet.
John's Status
I'm sending this to let you all know before Friday's meeting what we found out at Riley today. We saw Dr. Posey in the autism clinic. After talking with us for almost 3 hours, here's what his thoughts were:
1. John is more toward the autism side of the spectrum than Asperger's. This, primarily because his communication skills are not that fluent (doesn't ask about how other people are doing; often doesn't answer direct questions, etc.)
2. Dr. Posey feels that what we've been seeing behaviorally lately could be better attributed to autism than say, Oppositional Defiance Disorder. He considered that as a diagnosis but felt it doesn't apply well because John doesn't have the prevalent irritability and anger that usually accompany that. He feels that the misbehavior we've been seeing lately at school is more due to autism in that he's testing the boundaries. John has a hard time respecting rules that he thinks he can get around (but we knew that!) And something like yelling at the principal is more of an autistic behavior in that he gets upset but has difficulty drawing the line where he should stop.
3. He didn't feel bipolar was an applicable diagnosis because we don't see obvious frantic energy or lethargy at any particular times.
4. He thinks that Tenex would be a good next medication to try. We need to take him off Strattera for at least a week before we'd start the Tenex. Tenex is known for being better at slowing down hyperactivity and impulsivity and not as good with focus issues. We're not sure which way to go with this. If we do start it, it will be after next Friday's endoscopy in Cincinnati so that we don't confuse our food trials.
5. He's also referring us to an autism and behavioral therapist at the clinic. She may have some different ideas on how to work with him.
Dr. Posey will be contacting Amy and Sharon to get more information from them. I'll let you know what we decide about the medication change and what we find out after meeting with the behavioral therapist at Riley. I don't know when that will be.
I look forward to meeting with you all on Friday. Thank you for all your help.
-Carolyn
1. John is more toward the autism side of the spectrum than Asperger's. This, primarily because his communication skills are not that fluent (doesn't ask about how other people are doing; often doesn't answer direct questions, etc.)
2. Dr. Posey feels that what we've been seeing behaviorally lately could be better attributed to autism than say, Oppositional Defiance Disorder. He considered that as a diagnosis but felt it doesn't apply well because John doesn't have the prevalent irritability and anger that usually accompany that. He feels that the misbehavior we've been seeing lately at school is more due to autism in that he's testing the boundaries. John has a hard time respecting rules that he thinks he can get around (but we knew that!) And something like yelling at the principal is more of an autistic behavior in that he gets upset but has difficulty drawing the line where he should stop.
3. He didn't feel bipolar was an applicable diagnosis because we don't see obvious frantic energy or lethargy at any particular times.
4. He thinks that Tenex would be a good next medication to try. We need to take him off Strattera for at least a week before we'd start the Tenex. Tenex is known for being better at slowing down hyperactivity and impulsivity and not as good with focus issues. We're not sure which way to go with this. If we do start it, it will be after next Friday's endoscopy in Cincinnati so that we don't confuse our food trials.
5. He's also referring us to an autism and behavioral therapist at the clinic. She may have some different ideas on how to work with him.
Dr. Posey will be contacting Amy and Sharon to get more information from them. I'll let you know what we decide about the medication change and what we find out after meeting with the behavioral therapist at Riley. I don't know when that will be.
I look forward to meeting with you all on Friday. Thank you for all your help.
-Carolyn
Monday, September 18, 2006
Picnic at the park on Saturday
John climbs an ancient silo at the park. The park is on the site of an old farm, and a few things, like this stone silo, have been preserved.
As we ate our picnic dinner, we saw a grandaddy long legs walking across the sidewalk. Carolyn remembered when John was 3, he called a "Grandaddy Long Legs" a "Grand Old Spider".
She told the kids this. John got a huge grin on his face.
The kids are always fascinated to hear stories of when they were "babies".
Somewhere in the shambles we have little post-it notes, scraps of paper with cute quotes from the kids over the ages. This is likely all that is to come of those dreams of writing a book.
John's Status
No timeouts today in school. One verbal warning. Much better than last Friday with a record 6 (or was it 7) timeouts.
He seems better than last week.
He seems better than last week.
Sunday, September 17, 2006
Father-Son Ride
"Can we go for a motorcycle ride, Dad?" he asks.
"Sure," I reply. It doesn't take any persuading to get me out on the bike.
Sunday morning, skipping out on church. Singing hymns while riding past church parking lots packed full of cars. Rolling on the throttle and zooming past. Twisting through the hills, twists and switchbacks, the tree-lined streets of the Fall Creek area.
"Do you like twisty roads?" I ask.
"I ... don't know yet," he replies.
"Fair enough," I shrug.
"Do you like going fast?" I ask.
"I like going as fast as we possibly possibly can," he replies.
"Okay," I reply. Rolling on the throttle and pushing toward the redline. Rapid acceleration is the desired sensation. It matters more than top speed. It doesn't matter to him that I travel the speed limit; it matters that we reach the speed limit in under 3 seconds.
"Are you doing okay back there?" I ask.
"I am doing good," he replies.
"Slug-bug blue!" he yells, pointing at a passing VW Beetle.
"Are you getting hungry," I ask.
"Kinda," he replies.
"Would you like to stop for something to eat?"
"Yes," he replies.
"Would you like to eat our picnic lunch or just a snack," I ask.
"Just a snack," he replies.
Stop at a park, eat our snack. Explore. Find a baseball in the outfield. Play catch.
"Good throw!"
"Thanks, Dad."
Lots of time spent exploring, tossing a ball, exploring some more.
"Ready to go?"
"Yeah"
"Okay, let's gear up," I say. "Do you need help with your helmet?"
"No, I can do it myself," he replies.
Then, after a moment, "Is this right?"
"No, here, look at my fingers when I do it ... see?"
"Okay," he tries again, "How's this?"
"Good job!"
"Thanks, Dad."
"Sure," I reply. It doesn't take any persuading to get me out on the bike.
Sunday morning, skipping out on church. Singing hymns while riding past church parking lots packed full of cars. Rolling on the throttle and zooming past. Twisting through the hills, twists and switchbacks, the tree-lined streets of the Fall Creek area.
"Do you like twisty roads?" I ask.
"I ... don't know yet," he replies.
"Fair enough," I shrug.
"Do you like going fast?" I ask.
"I like going as fast as we possibly possibly can," he replies.
"Okay," I reply. Rolling on the throttle and pushing toward the redline. Rapid acceleration is the desired sensation. It matters more than top speed. It doesn't matter to him that I travel the speed limit; it matters that we reach the speed limit in under 3 seconds.
"Are you doing okay back there?" I ask.
"I am doing good," he replies.
"Slug-bug blue!" he yells, pointing at a passing VW Beetle.
"Are you getting hungry," I ask.
"Kinda," he replies.
"Would you like to stop for something to eat?"
"Yes," he replies.
"Would you like to eat our picnic lunch or just a snack," I ask.
"Just a snack," he replies.
Stop at a park, eat our snack. Explore. Find a baseball in the outfield. Play catch.
"Good throw!"
"Thanks, Dad."
Lots of time spent exploring, tossing a ball, exploring some more.
"Ready to go?"
"Yeah"
"Okay, let's gear up," I say. "Do you need help with your helmet?"
"No, I can do it myself," he replies.
Then, after a moment, "Is this right?"
"No, here, look at my fingers when I do it ... see?"
"Okay," he tries again, "How's this?"
"Good job!"
"Thanks, Dad."
Saturday, September 02, 2006
Austism Speaks
Autism Everyday
The link above is the site for viewing "Autism Everyday" that was on Good Morning America last month.
We identified with pretty much every quote out of every mom's mouth.
The link above is the site for viewing "Autism Everyday" that was on Good Morning America last month.
We identified with pretty much every quote out of every mom's mouth.
A Blog For Us
A blog for us. It's time. Blogging is easier than maintaining a website. It's a time thing. We'll try it out and see if it works. If it works, there'll be more frequent updates than what you're currently seeing.
What's a blog? Blog is short for Web Log. Just a special type of website that people use to log their thoughts on the web.
What's a blog? Blog is short for Web Log. Just a special type of website that people use to log their thoughts on the web.
Saturday, March 18, 2006
Report Card
Hey guys. Of course, John doesn't get actual grades yet, but his teacher wrote a great narrative that she put in with his card. Here's what she wrote:
"John is doing a great job this year in first grade. His reading/comprehension level has increased to a beginning second grade level. He has enjoyed reading the Henry and Mudge series as well as the Frog and Toad books. I am happy that he is able to focus for longer periods of time on a book, and as the book gets longer in length, he is excited about the challenge. We are working on taking Reading Counts quizzes on some of the books.
John has been excited about writing his books during writing workshop, I have enjoyed reading his non-fiction books. Currently he is working on an "All About" book on space. He should work to revise his writing to make it even better. Please continue to work on spelling words that we have learned this year conventionally. Reinforcing tricky words weekly will help him remember the more challenging ones. He is still learning how to use the dictionary to look up unknown words.
In math John continues to do well. I am pleased that he has passed 2 of the timed tests. He is enjoying our geometry unit and is very spatially adept - solving problems ahead of his peers and creating unique and exceptional patterns and shapes. he generally does very well on the weekly math quizzes.
John continues to struggle with staying on task, but has made improvement since the beginning of school. We are working on better relations among his peers using appropriate language and interactions. I am pleased overall with John's academics and behavior this period. He is a delight to have in class. Thank you for your wonderful support and communication this school year."
Thought you might like to see that. It was sure an encouragement to me!
"John is doing a great job this year in first grade. His reading/comprehension level has increased to a beginning second grade level. He has enjoyed reading the Henry and Mudge series as well as the Frog and Toad books. I am happy that he is able to focus for longer periods of time on a book, and as the book gets longer in length, he is excited about the challenge. We are working on taking Reading Counts quizzes on some of the books.
John has been excited about writing his books during writing workshop, I have enjoyed reading his non-fiction books. Currently he is working on an "All About" book on space. He should work to revise his writing to make it even better. Please continue to work on spelling words that we have learned this year conventionally. Reinforcing tricky words weekly will help him remember the more challenging ones. He is still learning how to use the dictionary to look up unknown words.
In math John continues to do well. I am pleased that he has passed 2 of the timed tests. He is enjoying our geometry unit and is very spatially adept - solving problems ahead of his peers and creating unique and exceptional patterns and shapes. he generally does very well on the weekly math quizzes.
John continues to struggle with staying on task, but has made improvement since the beginning of school. We are working on better relations among his peers using appropriate language and interactions. I am pleased overall with John's academics and behavior this period. He is a delight to have in class. Thank you for your wonderful support and communication this school year."
Thought you might like to see that. It was sure an encouragement to me!
Tuesday, January 31, 2006
Metallic Silver Jeep
We saw a metallic silver Jeep today. I guess the sun
shined on it just right so it sparkled. John said "HEY! I just saw a
glitter glue Jeep!" I love the way he thinks.
shined on it just right so it sparkled. John said "HEY! I just saw a
glitter glue Jeep!" I love the way he thinks.
Thursday, December 29, 2005
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.
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.
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.
Friday, April 23, 2004
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
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
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