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