Yesterday was a contradiction in many ways. It started out by getting my grandma’s recipe for scalloped potatoes in the oven and making the stuffing for the turkey. I was thinking of what I am thankful for. When I got to a stopping point in dinner preparations I came into my office and started writing a blog post relative to something I have always wanted to express…my gratitude to Billy Ray’s birth parents for giving him life and placing him for adoption when they didn’t feel they could handle a disabled child.
Before I could finish that post Billy Ray’s behavior became difficult. Support staff was here with us but it took both of us to intervene when Billy Ray was throwing furniture, knocking things out of the china hutch, etc., etc. When that happens I invariably go through a period of feeling defeated and a failure at providing appropriate care for my beloved son. I wonder if I should be sharing any of my methods for working with Billy Ray if we still relapse. After feeling sorry for myself for a while, I know that the best I have to offer you is to be real about what we experience so that if you experience similar you will know you aren’t alone.
Billy Ray is more verbal than some complex children. However, when it comes to communicating his frustration or physical pain he is not able to “get it out” in a way that helps us to know what he is experiencing. Many times his behavior is the best indicator that something is wrong in his life. I wrote about this in two recent posts Communication by Behavior and Change is Coming.
When unusual behaviors occur when we think we have him stabilized it means we need to regroup. I talk to Billy Ray as though he could carry on a two-way conversation. I want him to feel a part of the solution for his own life. Yesterday, I told him that we are going to look at his schedule to see if it might be irritating or if he is hurting some place. I asked him to let me know in anyway that he can what is bothering him.
We try different things. Some work others don’t. For example, his psychiatrist suggested Omega 3 fish oils for his behavior which we did. When Billy Ray had some pretty severe behaviors a week and a half ago, his primary medical provider suggested that we hold the fish oil for a week to see if that was irritating his gastritis and causing him severe pain. With yesterday’s behavior it is clear that isn't the problem.
After events like this I read the journal again and sometimes twice. It is amazing how looking at events that happened before behaviors seem more clear reading about them a week later than the day they happen. Sometimes the trigger to a behavior is there and you wonder why you didn’t notice before. When you are in the midst of a behavior crisis it is hard to see things as clearly.
Sometimes it is his schedule, others times it is physical. He is demonstrating signs that it is physical and also that he wants to be more involved in activities. In my Change is Coming post I wrote that he is demonstrating by doing more things that he wants to be busier. On the other hand, he is demonstrating that something is wrong physically in several ways 1) he just can't get comfortable in his clothes and is wanting sweats on in the middle of the day (it is usually hard to get him to put them on just to sleep in), 2) he is more in a Mommie phase where he wants me to do everything for him every though he enjoys a lot of "buddy" activities with his support staff and his stepfather normally and 3) his behavior is more severe than usual (the most severe behaviors have occurred when something is physically wrong). I have spoken to all the doctors involved and we can't find anything. The two issues seem to be fighting each other: he wants to be busier but doesn't really feel like it not having totally bounced back from surgery this summer.
While I hope that Parenting Your Complex Child (AMACOM Books April 2006) will make day to day life much better for your child and the whole family, it is a continuing effort not a once done, always done.
In a way complex specials needs children such as Billy Ray are a contradiction. He needs exact sequence (order) in activities and consistency about his schedule but he does change without notice. We then must figure out what he wants changed and fix it. Billy Ray really is my best teacher but it takes close observation.
Peggy Lou Morgan