A view of autism from along the spectrum

The opportunities for gaining insight into my boys’ thinking continues to come at the times when I least expect it.

I made a business trip last week to Central Florida. Yes, it was one of those rare business trips that takes me to somewhere to which I would actually travel for pleasure. The days leading up to the trip included much talk of a vacation to Disney World and of Dad bringing back T-shirts from this trip. My 7 year old indicated that he wanted nothing to do with either the vacation or the T-shirt. When asked why he didn’t want to go to Disney World, he replied adamantly: “It’s boring!” Subsequent conversation revealed that, in his view, a proper vacation must be to somewhere that has a subway. He continued to make it very clear that he didn’t want me to bring him a T-shirt, or anything else from Disney World.

I made an evening trip to Disney with some colleagues for dinner and shopping. As soon as I cast my eye on a tye-dyed T-shirt featuring the alien Stitch surfing a big wave, I thought I had a really good shot at bringing back something he liked. The boys named our golden retriever after Stitch and the pattern on the shirt was very appealing. While I didn’t want to force a souvenir on him, I also knew that I was bringing back something for everyone else. If he didn’t want it, it would be no big deal.

We’ll of course he loved the shirt. He insisted on wearing it the next day and was mad when it wasn’t washed when he got out of bed the following day. The real clue to his thinking came when we talked about going to Disney World. Instead of not wanting to go, he said he now wanted to go “about 25%.” That’s his very precise way of saying “part of me wants to go.”

I still don’t understand my son’s thinking that Disney World is boring but I truly appreciate how he let me know that he was starting to be open to the idea of a vacation there. I’ll continue to try to understand his thinking.

And before anyone says “Are you crazy taking two kids on the spectrum to Disney World”, know that I’ve done it with one, although we didn’t know at the time why he was so sensitive to the loud noises. A successful trip will require an IVP, Individual Vacation Plan, with all the appropriate accommodations and supports. And besides, I think I get sensory overload in places like Disney long before the boys do!

The first Nor’easter of the season is heading toward New England. We’ve been expecting it for days. Patience is not one of the skills the boys have mastered.

The boys are both very excited to go out tomorrow and hope to find a foot of snow. I’m looking forward to being out with them. Playing in the snow is such a fantastic sensory activity. You can run in it, slide in it, and lie down it and make snow angels. You can squeeze it into balls and throw it. You can watch the dog jumping through it, pushing it away with his nose to get to a smell that only he notices. You can help dad with the snow blower, moving the piles of snow where ever you want. I wish we could order up a foot of snow for sensory play whenever we want.

The flip side of a Nor’easter is the wind. Forty mile per hour howling wind is not such a wonderful sensory experience for any child, and even less so for the hypersensitive. You hear the snow blowing against the window. You hear the trees outside creaking as they bend, and sometimes, break. The wind leads to lots of anxiety about losing power. The flashlights, that we will probably not need at all, are already spread out around the house. We’ve even had to “practice” turning out the lights to see how dark it will be if the lights go out. We’ll see if the kids make it through the night in their own beds!

Update on Sunday morning: Current predictions are averaging over 2 feet of snow in less than 24 hours and continued high winds. It appears that the most of the sensory activity for today will be visual, as we gaze at the drifting snow through the windows. Maybe tomorrow…

Rather than blogging about autism, today I’m going blog about autism blogs. In my geek lingo, I call this ‘going meta’.

A few weeks ago I wrote about my intent to more closely follow the writings of other bloggers. Fortunately, the combination of Firefox and Sage that I tried is working wonderfully for me to make my blog reading easier. I click a button and can tell when any of 20 blogs have been updated. Two or three clicks let me add another blog to the list. It’s simple and it works.

The benefit is that I’ve found the writings of other bloggers incredibly rich lately. Two obvious reasons for finding such great writing are that I’m reading more consistently and that the number of bloggers continues to grow. I also sense that there is another, more subtle reason, hidden just below the surface. I’ll explain what I think this reason is.

A term that can be found all over the internet recently is Web 2.0. The meaning behind this term provides insight to the other reason that I believe is impacting our blogging.

While there is not a consistent definition of what Web 2.0 means, the meaning that is relevant here refers to the social components of the web that have enabled individuals to actively participate in the exchange of ideas. The social components include publishing on Bloggerand Wordpress, photo sharing on Flickr, recommending news stories on Newsvine and sharing bookmarks on del.icio.us. The web is no longer a place to simply get information, it’s now a place to exchange information and ideas.

The point (yes, I had a point!) is that I sense that some of the recent richness in the blogs that I read is that we are gaining insights from each other. These insights get reflected in our writings which in turn further increases our knowledge and insight. Issac Newton referred to this as “standing on the shoulders of giants”.

We may not be giants (yet!), but we’re standing on each other’s shoulders. And the view may not be clear yet, but we can certainly see farther.

It’s been a difficult few weeks. We make progress. We celebrate. We slip back. We start again.

Tonight I crawled in bed with my youngest for a little nighttime cuddling. I listened to him as he put so much effort to transform thought into speech and finally say “The groundhog saw his shadow.” I asked him how many more weeks winter would last and he responded, “Six, but I don’t care about that.” His mind had already moved onto something else.

But my mind stayed on the groundhog. Something about it lingered on. And then it hit me. I feel like Bill Murray in Groundhog Day. I don’t think any other idea has come closer to how the ups and downs have felt lately.

For those of you that haven’t seen it, Bill Murray plays a weatherman who relives the same day, February 2, over and over again. Every day he tries something different, trying to break the cycle. And every morning he wakes up to the same song on the radio, and starts all over again.

I’ve been trying to help one of my boys break out of a negative cycle. The cycle has had some impact at home and a lot of impact at school. Working with him takes an incredible amount of energy some days. Other days it comes easily. Over time, it can be draining.

In the movie, Murray’s character tries all sorts of things to break the cycle. He goes through days of selfishness and days when he spends his time helping everyone he meets. He spends many days learning to play piano and yet on a day of extreme desperation, he drives his car off a cliff. After each, he wakes up in the same bed and breakfast in Punxsutawney, PA.

Like Murray, I’m trying all sorts of things to break the cycle. Some days are as joyful as learning a new piece of music, regardless of whether or not we make progress. Some days are marked by hope, others by moments of desperation. One of the most poignant aspects of the movie is that every day, despite what happened the day before, Murray’s character gets up and tries again.

I expect the answer to breaking the cycles for my son will have a lot to do with growth, much as in the movie. My son will eventually tap into his own extensive capacity for learning and will make some permanent progress. The adults around him at home and school will also need to grow. We will need to shake off some notions about the meaning of his behavior. We’ll also need to learn more about how he reacts to stimuli in the environment. We will need to learn that his stimuli may be things that we still don’t even recognize. We’ll discover the antecedents to the behavior and will wonder why we didn’t see them earlier. We’ll need to be truly open minded and learn from one another as we identify what environment is “appropriate” for him to learn.

And the most important step will be starting over again tomorrow.