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.