Leeloo

Emmalee and Leeloo.

Leeloo is a bearded dragon that we petsat for some friends.

I love the name -- it's from "The Fifth Element".

Emmalee loved the lizard. She loves all living things, even reptiles.

John Deere

John and Emmalee visit the John Deere dealership...

Dirtbike Class

Pictures of John at Dirt Bike School in June

Cool Creek Park

Cool Creek Park pictures

Where the heck did that come from?

Sometimes, things are hilarious just because they're so unexpected from your kids. We had one of those moments last night. The kids and Ted were horsing around and getting pretty silly. Emmalee had just eaten a piece of toast loaded with jelly. She walked up and planted a very sticky kiss on Ted's cheek. He said "Hey, what are you doing?" She said "I have sticky lips." To tease her, he said "You have stinky lips?" She said 'NO. STICKY lips!" It then progressed to stinky nicknames for the whole family - In order: Ted, Carolyn, John, Emmalee, Lexi and Snowflake became Stinky Breath, Stinky Feet, Stinky Toots, Stinky Lips, Dogbreath and Scratchy. But the thing that about killed us was when Emmalee stood up on Ted's lap and proclaimed loudly into his face " FEAR ME, for I am STINK!"

We about fell over. Where on earth did she hear that? Some cartoon, maybe. Gotta love those moments of hilarity. They get us through chaotic times.

Motorcycle Expo

Emmalee poses by her favorite chopper from the Expo. Note her "Orange County Choppers" T-Shirt.
This charming fellow took the kids photos on the dirtbike track.

First Dirtbike Ride

John and Emmalee got to ride dirtbikes at the motorcycle expo's dirt bike test track.





Emmalee geared up and ready to ride.

Emmalee laps another kid on the outside lane.

John gets some last minute instructions and gets psyched up for his ride.

Though the helmet hides his expression from this vantage point, whenever we caught a glimpse of his face through the mask he was grinning ear to ear.

Detailing Dad's Bike

Emmalee wanted to help me detail my bike. There was still road salt on the bike from being trailered from Detroit during a snowstorm when I bought the bike a week prior. My kids bought me a can of Honda Motorcycle Polish for Valentine's Day. Emmalee was thrilled to be able to use it with her Daddy.

John's Birthday Party

Guinea Pig for Christmas

A Christmas treasure hunt. 

 

 

1

A very sweet girl

deserves a sweet friend

Follow the clues to find

your gift at the end

 

2

Look up on the door

for your very first clue

once you get there

you'll see what to do

 

3

Better than toys

from a toy store like Meijer

to get your next clue

find the washer and dryer

 

4

Loved more than princesses

or Barbie's, by far

if you want the next clue

just go out by the car

 

5

She's fuzzy and sweet

but nothing like Flower

To find your new friend

go see where we shower

 

This piggy can't oink

or hold coins like your bank

but if you give her your love

She'll squeak lots of thanks

 

 

 

 

 

Combating Autism Bill passed

Woohoo!

A little more of the story can be found here.

Thanks, guys!
-Carolyn

Berkshire Sunset

Nights In White Satin playing on the car stereo.
Sunset in the Berkshires en route to the airport.

Bedtime Routine

Who, Me? I'm completely innocent!

Rock Tavern, NY

Driving to Massachusetts, listening to the radio as I travel I-84 east in Pennsylvania.

Suddenly I hear a local radio commercial promoting Orange County Choppers.

My wife is a huge fan.

Cross the state line into New York. Big old sign says, Welcome to New York. Orange County. How far away can the OCC shops be? I had no idea I'd be passing through their namesake county.

I'm driving alone. I call her up, 800 miles away, to say, "Guess where I am?"

"Scranton?" She asked.

"No. Orange County New York!"

She shrieked with excitement, and helped me plan a side trip to OCC. Only two miles off the interstate, and I had to stop for gas anyway.

Very cool. I was in a dreadful hurry and would've liked to stay more. But I knew how much my wife would want to come, so I know we'll make the journey again, and stay longer when it's the two of us.

Pennsylvania

Advice: "Don't take the Pennsylvania Turnpike. It's longer and it costs more -- it's a toll road/"

A man will often have at least two reasons for his actions. One, a perfectly sound, logical explanation. And the other, the real reason.

The logical explanation: The northern routes all had winter advisories. (This is true. Illinois, Michigan, Northern Ohio and Western NY were all under advisories.)

The real reason: I traveled to Harrisburg, PA in 2004 and I wanted to relive the trip. Plus tack another 360 miles upon it.

"You can tell him about the winter advisory; my family wanted me to be safe so I took the southern route. But in reality, I'm a stubborn cuss and I'm going to do what I want."

Scope delayed

We're running into some problems with our Dec 7 scope and it looks like it will have to be rescheduled to sometime in January. When I find out what the new date will be, I'll let you know. At least we don't have to deal with a hospital visit in the middle of the Christmas season now!

Sleepy and weepy

John seems lethargic about an hour after taking a dose of his new meds. And he seems prone to crying.

Tonight he cried because he was bored. He wanted a TV in his room so he could be normal.

"Do mommy and daddy have a TV in their room?"

"No"

"Does Gramma Karen?"

"No"

"Does Gramma D?"

"No"

"Lots of people don't have TV's in their bedroom."


Hard to know if its the meds, or lack of sleep, or what.

We'll keep an eye on it.

God please help us help our boy.

A Blog By John

John likes to collect interesting things. These things -- even pieces of trash and broken bits of toys -- are emotionally significant to him. Parting with them is very traumatic.
I suggested that instead of keeping every little interesting artifact, we create a blog and take pictures of these interesting things.

He liked that idea. I'm excited about it because hopefully it will take the place of his packratting, and will allow him to throw things away.

We'll always have pictures. And memories.

John's blog is: aBlogByJohn.blogspot.com

Denise's Car

1999 Saturn Wagon
John said, "I like it way better than your car, Dad"
Emmalee said, "Can we keep it?"
John said, "It's the awesomest car we've ever had."

MSNBC Article: What Happens When They Grow Up

This is a long article, but there's some stuff in the first couple of pages about what's happening with that Combating Autism bill. Thought you might like to hear the latest.

Thanks,
-Carolyn


Subject: Newsweek.com on MSNBC Article: What Happens When They Grow Up

What Happens When They Grow Up
Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.

Combating Autism

ASA Update on Combating Autism Act
Posted by: "margueritecolston" mcolston@autism-society.org
margueritecolston
Tue Nov 21, 2006 2:50 PM (PST)

As you know, the Autism Society of America (ASA) has been working closely with congressional leaders to pass the Combating Autism Act this year. The bill was passed unanimously by the Senate in August Of 2006, but House Energy and Commerce Committee Chairman Joe Barton (R-TX) would like to make additional changes to the bill before Sending it to the President's desk.

Chairman Barton's version of the bill makes several significant changes to the legislation. It changes provisions related to the National Institutes of Health's (NIH) "Centers of Excellence" Program, specifically, requirements that the NIH create separate Centers of Excellence in Environmental Health and Autism. Chairman
Barton's compromise does allow for the study of environmental Factors and autism (including studies into the causes of autism), But does not mandate that these particular types of Centers be Funded.

ASA supports efforts to bolster research into environmental factors And autism, and supported the initial proposal to create Centers of Excellence. The legislative process, however, is one that requires Negotiation and compromise. Chairman Barton's current draft allows For research into this critical area, and he has also suggested that He would be providing additional, supporting documentation to the NIH to ensure that research in this area is expanded.

ASA is working with Chairman Barton and the autism community to Ensure that his statement (which provides guidance to NIH on the Congress's intent for this legislation) clearly reflects his desire To provide for additional research into environmental factors and Autism. We will continue to work with his office, and other Congressional leaders, to see that NIH is held accountable for the Research it does, and that research efforts reflect the needs of Individuals with autism and their families.

While some autism groups are suggesting that the community abandon This bill with the hopes that we can pass a stronger bill in the 110th Congress, ASA believes that we cannot wait another second for The Combating Autism Act. The compromise that Chairman Barton has Offered would provide almost $1 billion for autism related research At NIH. It would provide for research into a range of important areas, from neurobiology to genetics to toxicology.

While the Combating Autism Act is not perfect, it is a step in the Right direction == one that will get us closer to finding better Treatments, diagnostics, and interventions for autism. As an Organization representing individuals with autism, their friends, Families, and supporters, ASA supports this legislation and will do all we can to ensure its passage.

New Med

John had another appointment with the autism clinic on Friday. I had meant to attend, but had an acute lack of planning, and ended up not being able to leave work to attend. I attended by conference call. Carolyn took John. Grandma Karen stayed with Emmalee.

The doctor listened to our description of John's behavior, and his reaction to Strattera, and how his behavior improved when we discontinued the straterra. John's behavior improved on Tenex, but he had adverse side-effects of shortness of breath and sinus drainage (throat clearing).

This lead us to another drug similar to Tenex. Clonodine. It is mildly sedating. We launched John on this drug yesterday.

Best Friends

Emmalee and Arantza

Emmalee's birthday card from Arantza said:

Dear Emmalee, You are my best friend and I love you. Arantza.

5 and 40

Emmalee and Daddy

Emmalee's 5th

Cousin Drew and John
Tammi, Aaron, Emmalee, Arantza
Emmalee
Carolyn
The birthday girl

Deep Thoughts

John hit me with a very serious conversation out of the blue.

He began with: Dad, I always wanted to be what you expected, but I don't feel that I am.

"What do you mean?" I asked.

The first thing that is most important to me is how I look.

The second thing that is most important to me is knowing lots of things that other people don't know, and they wouldn't know that I know unless they asked me.

"Well, John, you look great so you don't have to worry about that. And you do know lots of things, so I don't think you'll have a problem there." (Let's save the "looks aren't important" discussion for later, I think.)

He smiled and continued, "The third thing is that lots of things make me sad that don't make other people sad."

I said, "How do you feel about that? Do you wish you weren't sad about those things, or do you wish other people understood why you were sad about those thing?"

He said, "I wish I weren't sad about so many things."

"I wish there were more things that made other people sad than there were that made me sad."

(This is classic autism and the launching point for a whole discussion on the nature of autism and grief. Once folks understand that a big part of the emotional makeup of the autistic person is grief and loss, then all that psychology has to say about grief and loss becomes applicable to dealing with autism...)

He said, "And the fourth thing is that sometimes people think I'm mad when I'm not."

And I said, "You know what?" My hand on his chin, raising his gaze to mine. "I have the same problem. That's something that I have to work at."

Carolyn said, "Sometimes people think your dad is mad when he's excited, and they get mad at him."

And I said, "That's something that I have had to work on in my own life. You and I can work on that together."

He smiled.

He said, "And the last thing is that I wish I could be normal, but I'm not. I don't want to be unique."

I said, "It's okay to be unique. And it's also okay to want to fit in."

He said, "I want to fit in but I feel that I don't"

I said, "Well, we can help you with that, and you can learn how to fit in."

And he said, "Good."

EENT

We're pursuing a referral to an Eye-Ear-Nose-Throat specialist for John because his throat clearing has continued even after being off all meds. Possible damage to the throat during the last scope?

All Day Can You See

Emmalee has a musical ear and can do a fairly good impression of her favorite scenes from cartoondom. She mimics pitch and cadence of the characters reciting their lines.

"It's hot in Topeka!" she says, quoting "Fosters". She goes on for a full four minutes, reciting the scene pretty much verbatim. "...and showers in Spokane."

Sometimes, not knowing the real words, she'll fill in the blanks with words that sound similar.

"Oh say can you see" from the National Anthem became, "All day can you see..."

Coughing and clearing the throat

John's cough and throat clearing is clearly related to the Tenex. Though it did not go away completely in the 5 days without Tenex, it redoubled today the first day we added Tenex back.

Enough of this roller coaster! Poor kid.

It's a bummer that a drug that seems to work well enough has these unacceptable side-effects. He was practically hoarse with all the coughing and throat clearing while on the Tenex. Not to mention the shortness of breath.

Sigh.

I guess we're back to shopping for a medicine to help him.

Wiley

Emmalee and Granma Karen's cat.



This cat has a great personality and is great with the kids.

Afternoon at the park

Emmalee and dad played in the park on Friday afternoon.

Lunch Date

John was still at school. I picked up Emmalee from Preschool. I asked her if she was hungry. She said, "YES!".

We drove to Taco Bell. I had meant to bring the chess game, but had forgotten it. She and I used to play chess in Taco Bell while Carolyn and John were at Purdue University on Saturdays last spring.

Instead of chess, we played tic tac toe and hangman.



She was cold but didn't want to wear her authentic poncho that her venezuelan friend had given her. She didn't want to get it messy. So she borrowed my jeans jacket and posed for this picture.

Just me and the kids for the weekend

Carolyn attended Linae's wedding in Minnesota. I have the kids for the weekend.

Pics Added

I added some pics to older blog entries.

October 2

Sept 18

Headaches and flashing lights

Emmalee is complaining of headaches. Yesterday she told Carolyn that she often sees flashing lights. She likes them because they're pretty.

We had taken her to the eye doctor and she needs glasses. We took her to the eye doctor because of her headaches. She had complained of headaches and they seemed worse after reading or playing on the computer.

We were hoping to push the eyeglasses into 2007, just for insurance reasons. But I don't want my girl to suffer.

However, the flashing lights complaint doesn't sound like an eyeglasses problem, it sounds like migraines.

The doctor confirmed that children can and often do have migraines.

Shortness Of Breath

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.

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.

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.

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.

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)

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

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

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.

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."

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.

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.

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!

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.

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.....

Good news on John

We went back to Riley on Tuesday and it may be a while before you hear from me again on John because he won't need to see the cardiologist for another year! Yea! He's doing so well that the Dr. feels we can wait that long to see if the heart will heal itself even further.

Once again, the Dr. didn't back down on the percentage chance that John will have to have heart surgery - that still stands at 90%, but he was very impressed with how well John is doing. He's growing like crazy (less than 15 months old and already over 34 inches tall), which is a really good sign. Plus, the tests show that the blood pressure through the hole in his heart isn't as much of a problem.

The great news for mom and dad is that starting in May, John will be able to play with other children. I'm so happy for him and for us. Now that we don't have to be quite so protective, life should assume a more normal quality. The enforced isolation was hard to work around sometimes - and he's starting to need the socialization.

Just thought you'd all like to know. Thank you for your prayers and concern.

Sicks Weeks

For six weeks around January, I couldn't take John anywhere because of the flu that was going around. Since then, I've resolved every week to come down for lunch and haven't made it. There was also a week in late Feb. where he was very sick because of some antibiotics he was on. He had to take them because he fell and split his chin open on the kitchen floor while demonstrating his new walking skills. Got three stitches! His Dad has a scar exactly like it from when he was about a year old too.

Not Walking Yet

The snow is beautiful. We're going through our firewood like crazy. I've kept the fireplace going ever since our weekend away. I got hooked on it, with having one in our room. =) It keeps it nice and cozy while the snow is falling. It's been wonderful.

John's doing great, but he's not walking yet. I don't think that it's because he's not capable. I just think crawling's easier. He has the balance and the strength, I just don't think he has the motivation yet.

Little booger.