A view of autism from along the spectrum

Wade’s recent post on the Combating Autism Act got me paying more attention to this often discussed (except in House of Representatives) piece of legislation. After ranting a bit in the comments to Wade’s post (Sorry Wade, I’ll keep future rants on my own blog!), I paid a little more attention to what has been going on.

I was pleasantly surprised at the amount of information that was so readily available. I was able to see Rick Santorum and Joe Barton on CNN via YouTube. I heard an interesting interview on my iPod. Heck, even the House and Senate have a wealth of information on-line. I was unpleasantly not surprised at the state of politics I found therein.

Growing disillusioned while conducting my research, I thought back to a time when politics wasn’t so petty and ego driven. To a time when people in Washington cared about doing what was right. To a time when people not only did the right thing, but also engaged in witty banter while walking down hallways. Yes, I thought back to a time when Aaron Sorkin was writing weekly episodes of The West Wing. To a time when 44 minutes of drama was enough to resolve political gridlock (88 minutes over two weeks for a particularly difficult issue). My thoughts eventually took me to this question: What Would Aaron Sorkin Do?

Now I’m no Aaron Sorkin, but I can’t help but think of a few scenarios that he might use to address the current situation. Since he’s a little busy with another writing gig, I’ll pass them on without his review.

• In a last minute attempt to save face, Rep. Joe Barton holds a press conference. He states that he sent an email last week to his entire committee indicating that he is willing to release the Combating Autism Act for a vote but no one replied. Senator Ted Stevens joins Barton at the press conference and goes on to explain that the email was never delivered because the internet tubes are clogged. The committee agrees to release the bill to vote as long as Senator Stevens agrees stop referring to the internet as a “series of tubes“.
• Sorkin updates the story from The West Wing season 2, episode 17, in which an elderly Senator filibusters in order to get a bill passed with money for autism research. In the West Wing version, Senator Stackhouse from Minnesota reads recipes for 8 hours, preventing the Senate from adjourning for a weekend recess. As the filibuster eats into the weekend, the White House staff realizes that the Senator has an autistic granddaughter and rounds up support for adding the autism research money to the bill. Sorkin would make some adaptations as House rules preclude a filibuster. Changing the storyline to keep Barton from going home for Christmas would be interesting.
• In a third possible scenario, Representative Duncan Hunter, Chairman of House Armed Services Committee, submits a bill to the house floor for a vote. The bill allocates $1 to fund upgrades to the US military base in Qumar. Before the vote, a Fellow Californian, and Chairman of Appropriations Committee, attaches an amendment consisting of the entire Combating Autism Act.
• House Republican leaders show up in Barton’s office and tell him to let the bill go or lose their votes for any leadership position for the next session. Again leveraging the script he penned for The Stackhouse Filibuster, Sorkin has President Bush, within earshot of reporters, saying of Rep. Barton “He’s a curmudgeon. A grouchy old crank,” The House leaders and President Bush also force Barton participate in the annual Big Block of Cheese Day. He is assigned to sit down with Mike Bernoski and actually listen to what he has to say.
• In my last scenario, Barton realizes how out of touch he is and releases the Combating Autism bill. In a press conference he says “If 244 Representatives cosponsored the Combating Autism Act and only 14 cosponsored my NIH Reform Bill, maybe something is wrong with the bill or my politics.” Nah, that one is too idealistic for even Sorkin.

I can barely believe what I read tonight from my fellow bloggers.

My heart breaks. Again.

SJ sleep habits were different from birth. We expect that with infants, but unlike LJ and MJ, he never shifted to a typical sleep pattern. He went to sleep late, woke in the middle of the night and woke up early. Once he was out of a crib, he began getting up in the night and crawling into bed next to someone else, usually my wife. Seven years later, we finally found something that is making a difference.

We noticed some unusual sleep habits when SJ was small. Every night we would tuck SJ in with head on or next to his pillow and the covers tucked in around him. An hour later, SJ would be lying on top of his covers with his body flipped around so his head was at the foot of the bed. It was like this every single night, and pretty much still is.

We noticed the other unusual habit when SJ crawled into bed with us. During the day, he was mostly indifferent or even adverse to hugs and close contact. Nighttime was a very different story. After crawling into bed, he would snuggle up close to one of us. After a while, he’d throw an arm over us, followed shortly by a leg. This was followed by elbows in the neck and knees in the back. Eventually, arms and legs would be in knot. We’d get up and put him back in bed but there was rarely a night that he stayed there all night. Some nights he would just get out of bed and lay down on the floor in the hallway.

A few weeks ago we got around to replacing his mattress. His old one was very firm and without a lot of padding. We took SJ with us when we made the final shopping trip. When we walked into the store, he immediately found one of the new viscous foam mattresses that have no springs. I tried to get him to try a more traditional (less expensive) mattress. He tried them but he kept going back to the foam mattress, laying down on it while wearing a huge smile.

We were just about to buy a regular mattress that it hit me. If he really likes the feel of the mattress, and it sure looked like he did, maybe he’ll sleep better on it. Of course, maybe he wouldn’t but there was no way to know for sure. It was enough for to know that it might help. So yes, we paid a few hundred dollars more and bought the foam mattress.

In case you’ve never tried one, lying on a foam mattresses is a completely different sensory experience. You feel the support of the bed on all parts of your body at once. There’s no bounce and your body sinks into it, giving the feeling that lying in the bed rather than on it. It feels rather strange to me, but SJ really likes it.

On the way home, my wife and I decided to put some effort into increasing the odds that the bed would make a difference. We gave SJ lots of verbal reinforcement that he was going to comfortable and that he would want to stay in his own bed. We also told him that if he slept by himself for 10 nights in a row, we’d put up the bunk beds and he could have the top bunk.

Well of course he slept by himself the first ten nights. He got up a few times but went back to bed by himself. We gave him a freebie and let him crawl in with us one night during a thunderstorm.

He kept up his end of the bargain. I’m still trying to find the missing hardware to stack the bunk beds.

When the book meme was making it’s round on the autism blogs this past summer, one of the topics hit a nerve and stuck with me. The topic was “Name a book that changed your life”. I’ve read a lot of books but I couldn’t think of any that changed my life in a significant way. Still, I kept thinking back to the topic.

A few weeks ago, it hit me. There was a book that changed my life in a significant way. It shaped the way I look at the world and, more importantly, shaped the way I look at myself. After reading a very upbeat post that Kevin Leitch recently wrote, I knew I had to write about it.

The book is Man’s Search for Meaning by Victor Frankl. About 15 years ago, three people, referred me to the book, over the course of only six weeks. I had never heard of Frankl or the book before but the referrals were enough to send me to the library.

Victor Frankl was an Austrian neurologist and psychiatrist who was deported by the Nazis to a concentration camp. He spent the last several years of World War II in various camps. Fankl and others in his concentration camp were eventually liberated in April 1945.

Frankl’s book, Man’s Search for Meaning, is primarily based on his experience in the concentration camps. During this time, Frankl saw both the best and worst of mankind. And more importantly, he saw examples of each in both his captors and his fellow prisoners. Despite losing his freedom, his family, and nearly his life, he recognized that he still carried the most important freedom inside himself. Frankl wrote:

…everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way. (emphasis added)

I’d like to be able to write that I always use the freedom Frankl describes to choose attitudes that reflect my most fundamental beliefs. I don’t, but his ideas are always there as a goal. Through Frankl’s writings, and others that he influenced, I know that what happens within me has far more impact than anything that happens to me.

Another quote, which goes to the core of Frankl’s impact on me:

When we are no longer able to change a situation, . . . we are challenged to change ourselves.