Saturday, March 4, 2006

Seeing The Light at the End of the Tunnel

The past year has been a confusing one read Billy Ray’s “communication by behavior” because there were so many things to untangle. Parts of these events have been shared partially in prior posts. It will be easier to follow the chronology and share our joy at making progress to be a bit redundant.

Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.

In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.

Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.

Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.

After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.

In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.

His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.

This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.

Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.

Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.

It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.

Until next time,
Peggy Lou Morgan

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