A view of autism from along the spectrum

After about 8 days of working hard at changing behavior during the nighttime routine, we did it! We got through without even a hint of a meltdown. No frustration, no escape tactics, no emotional disregulation. Just a ‘typical’ nightime routine.

Tomorrow is another day and I know we have more work to do but we’ve made progress.

If the baths on time
I can tuck him in by nine
Kiss my wife goodnight and write my blog . . .

OK. There will be no more quoting 30 year old songs by Bachman Turner Overdrive (And don’t even get me started on Village People.)

I spent a lot of time over the past week or so working very hard at what looks like absolutely nothing.

What I really worked so hard at is actually ‘not reacting.’ Behavior outbursts are a come and go problem in our home. Now that our son is settled in to his new school, I’ve made an effort to get some of the other routines back to normal. Not surprisingly, I ran into some resistance.

I was unprepared for the magnitude of the resistance the first evening and the situation escalated quickly. I didn’t get too far into it when I realized that the best thing I could do was back off and let my wife take over, even if it meant taking a step backward in the effort to establish routine. If I kept going, we’d take two or three steps backwards. I had no patience and I was making things worse.

The next day I was ready. I put my ABA (Amateur Behavior Analyst) hat on and prepared to do nothing during the outburst that was sure to come. When it came, I unemotionally directed my son to follow me to my bedroom where I turned on a soft light and lay across the bed reading a book. I provided no positive reinforcement and barely acknowledged the outburst. I left him to continue the outburst on the bedroom floor. I provided some occasional back scratching and distracted him with talk during lulls in the outburst. Eventually the outburst subsided and he finished the nighttime routine with lots of positive reinforcement.

The outbursts continued each evening and I continued to ‘do nothing’. I spent so much time doing nothing that I read over a quarter of David McCullough’s 1,100 page biography of Harry Truman. I also did some more back scratching, provided some redirection, and modeled some sensory activities.

This is not the first time I’ve been through this cycle and I know its not the last. It can be incredibly difficult to hang on through the outburst showing no emotion but a smile. Focusing on the goal provides the strength for me.

It’s paying off. I’ve had less time to read each night and I haven’t been as emotionally drained by the time bedtime is over. I even had enough time to blog tonight!

I love finding things that have a meaning or an impact that go far beyond immediate appearances. I found one this morning.

Today was Day 5 of my son’s new school program and I drove him for a before school activity, staying until it was over to make sure it went OK. I walked with him to his classroom afterwards and was somewhat surprised when we failed to make a turn toward Room 2. I then learned that he starts each day in his mainstream classroom. This was the first time in several years that he hasn’t started and ended the day in a self contained classroom, even when he was mainstreamed for all his classes.

My first thought was: This isn’t right! Mornings are hectic. What if something goes wrong? Where’s his aide? I shoved the ideas aside and checked in with his teacher. I then met his new aide and chatted about the events of the previous day. All the while, I was stealthily observing how the morning routine was going. As children finished gathering, I said goodbye and walked away.

Before I even reached to door to leave the school, my sense of concern about the changes in starting the day had been replaced. I realized that the change eliminated the extra transition (from the self-contained to the mainstream classroom) each morning. He’ll have much more time to get comfortable in his space each day. He’ll only have to settle into his surroundings once.

I followed this train of thought a little further. I realized that by starting the day in the mainstream classroom my son might get the subtle message that he belongs there, all day! It’s a different message than the one we’ve been sending for a few years. A little bit of success may lead to increased confidence in his own ability to handle starting the day in the same way as other students. Learning to deal with this before middle school would be wonderful.

I’ll readily admit that these changes may be completely trivial and simply result of the different logistics of different programs in different buildings. I’ll take them anyway as the risks are low and the upside is high. I’ve learned it takes lots of little changes to find what works and that’s there’s something positive to be found in most changes.

I’m encouraged by the large number of upbeat posts that my fellow bloggers have written over the holidays. My New Year’s post, like my Christmas cards, is late. It’s been a crazy couple of weeks for me and my focus has pretty much been ‘one day at a time’. As things have been calming down and I find myself reflecting a bit on my participation in the blogosphere ( Ugly word! Maybe for my next rant I’ll take on words from the internet).

It took me way too long to start blogging. I decided to start a blog this spring. At the time, I could only find one other person blogging regularly on autism (Props to Kev for blogging since June 2003!) Maybe there were more, but I don’t recall finding them. By the time I picked a name, evaluated blogging applications, made some graphics, hacked someone else’s layout, got a host, and started posting, a spectrum of other bloggers were already on-line. It took me a while to catch up and get to know other people’s stories. Actually, I’m still catching up. Meanwhile others continue to join the conversation.

I have certainly learned a few things. When I started putting together a blog, the term neurodiversity was new to me and I had never heard anyone describe an intervention as bio-medical. I had no idea that the disagreement between views on interventions could be so strong. I’ve been impressed with the desire to rise above disagreements for the purpose of continuing dialogue.

I thought that I had some worthwhile things to contribute. I was pleasantly surprised to find so many other people sharing valuable thoughts and ideas. I quickly realized that I need to spend more time paying attention to others if I was to make my contribution meaningful.

I thought it would be easier to keep up with the on-line dialogue. Setting up some RSS feeds helped, but it still seems like it should be easier. I just tried the combination of Firefox and Sage this afternoon. It looks promising. Maybe I’ll be able to keep up. If you haven’t ditched IE for Firefox, I suggest doing so. As my youngest told his first grade teacher last year, “The blue ‘e’ lets bad things on your computer”. He may often struggle communicating, but not about the computer.

I relearned an old lesson that good writing takes a lot more work than just having a good idea. My inability to find spelling and grammatical errors while proofreading became obvious after my first post.

I learned that, even though my wife and I talk about autism constantly, writing a blog is another way to share ideas. She gets a little more insight into me with each post she reads. I’m still waiting for her to leave a comment!

The best part has been the sense of support that I both observe and experience. I’ve certainly found this type of support with other parents in person, but I didn’t expect the on-line connections to feel as real. The connections are real enough that when I passed a car with an Autism Awarness magnet in New Jersey on Monday I had to turn to see if Kristina or Eileen were driving. They weren’t but I realized that you’re never to far from autismland.

I’m looking forward to both reading and blogging through the year. I’ve got a few posts that have been rolling around in my head for weeks now. Some are simple, and some are going to take some work to write clearly. Some are very personal, and some may be viewed as controversial. I’m looking forward to putting pen to paper (or fingers to keyboard) and clicking on the publish button.

Happy New Year!