A view of autism from along the spectrum

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…

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.

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.

It has felt like it’s Autism 7×24 lately. The transition between school programs for one of my sons has moved autism even more to the center (if that’s even possible!) of our busy lives. Even more of our lives over the past few weeks have revolved around various aspects of autism, from school meetings, social skills groups, educational evaluations, and using vacation days to stay home while my son is “in transition” between programs. While I’m happy to do all of it and even proud of how I’ve been able to make a difference, I also admit to feeling rather worn out. It’s easy for me to become wrapped up in the day to day challenges and lose sight of the bigger picture.

While waiting for an appointment last week, I picked up a copy of Time magazine’s Best Photos of 2005 issue. I expected to be impressed with some exceptional photography, but I was not prepared to be touched emotionally. I opened the magazine and I found page after page of pictures of the devastation caused by last December’s tsunami, Katrina’s destruction in the US, and the recent earthquakes in Pakistan. Perspective came back to me bit by bit with each image as I realized how my current challenges pale in comparison to those of many others.

I’ve always found this time of year appropriate for taking a personal inventory and recognizing the many things for which I can be grateful. The experiences of the recent weeks provide a great framework for it. The blessings I’ve been given are many and the burdens are simple in comparison. The goal for me is to continue to recognize and appreciate the rewards that come from facing the day to day challenges. The opportunity is there for the taking. The first step is to keep the proper perspective.

Some really great things happened as we dealt with the breakdown in my son’s placement.  After my wife took him home from school last week, following a morning in which things went very poorly, I told some of the staff that we agreed that it was time to make the change.  A lot of discussion ensued and a staff member asked if I thought my son ‘needed closure’.  We agreed that it was important for him to leave on a positive note rather than having the last few weeks overshadow the two and one half years in the program.  I envisioned closure to mean a chance to quietly say goodbye to his teacher, his aide, a few peers, and the staff that has supported him.  The school team had other ideas. 

Earlier this week, my wife brought him back to school at the end day.  His mainstream and special ed class had all gathered for a going away party.  Good Luck posters were splashed on the computer screens in the classroom.  Teachers brought in cupcakes and cookies.  The students had made a large number of cards wishing him well.  Most were covered with pictures of his ’special interests’ that they all knew very well.  One student even sang a song.  The principal and support staff were there along with his mainstream teachers from the two prior years.  He exchanged phone numbers with a few classmates before leaving.

A week ago, he wanted nothing to do with a new school and acted as if he might be able to prevent the change from occurring.  The night of the going away party he told me he was sad to be leaving his classmates.  He’s also expressed both anxiety and excitement about his new school.  In other words, within a week, his reaction has evolved into a set of very appropriate emotional responses.  I’d even call them typical.  I’d even call his recognition of his feelings as mature.  He still has some emotional baggage about having to make a change, but to me it looks like the change in placement is already showing benefits.

We’re incredibly grateful to the staff for such a wonderful sendoff. If you’re reading: Thanks Again!

Productivity blogger Merlin Mann summarized some of GoDaddy founder Bob Parson’s tips for keeping the telephone from interrupting us. Merlin, as usual, draws a clear picture of how a simple productivity tip can make a noticeable impact in our quality of life. It reminded me how I need to prevent external distractions from taking away from the time I have with my kids. The timing was perfect as I chose to blow off a call from mom last night to focus on the kids. (OK, it was mom; I didn’t really blow her off. I answered and said I’d call back.) It’s pretty powerful to make that choice at a conscious level. The time with the kids was wonderful, and mom didn’t mind. I chose to blow off a few more distractions tonight until after they went to bed. It felt good tonight too.